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."

Get a playlist! Standalone player Get Ringtones

Sunday, October 30, 2011

Warren Buffet's Idea to End US Deficits



Warren Buffett, in a recent  interview with CNBC, offers one of the best quotes about the debt ceiling:
 
"I could  end the deficit in 5 minutes," he told CNBC. "You just pass a  law that says that anytime there is a deficit of more than 3% of  GDP, all sitting members of Congress are ineligible for re-election.  The 26th amendment (granting the  right to vote for 18 year-olds) took only 3 months & 8 days  to be ratified! Why? Simple! The people demanded it. That was in 1971...before computers, e-mail, cell phones, etc.  Of  the 27 amendments to the Constitution, seven (7) took 1 year or  less to become the law of the land...all because of public pressure.

 
Warren Buffet is asking each addressee to forward this email to a minimum of twenty people on their address list; in turn ask each of those to do likewise. In three days, most people in The United States of America will have the message. This is one idea that really should be passed around. *Congressional Reform Act of 2011*
 
1. No Tenure / No Pension.  A Congressman collects a salary while in office and receives no pay when they are out of office. 
2.  Congress (past, present & future) participates in Social Security.  All funds in the Congressional retirement fund move to 
     
the Social Security system immediately. All future funds flow into the Social Security system, and Congress participates  
     
with the American people. It may not be used for any other purpose.
3. Congress can purchase their own retirement plan, just as all Americans do.
4. Congress will no longer vote  themselves a pay raise.  Congressional pay will rise by the lower of CPI or 3%.
5. Congress loses their current health care system and participates in the same health care system as the American people.
6. Congress must equally abide by all laws they impose on the American people.
7. All contracts with past and present Congressmen are void effective 1/1/12.
 
The American people did not make this contract with Congressmen. Congressmen made all these contracts for themselves. Serving in Congress is an honor, not a career. The Founding Fathers envisioned citizen legislators, so ours should serve their term(s), then go home and back to work.
 
If each person contacts a minimum of twenty people then it will only take three days for most people (in the U.S.) to receive the message. Maybe it is time.

THIS IS HOW YOU FIX CONGRESS!!!!!  If  you agree with the above, pass it on.

2012 Health Insurance

This years health insurance cost is taking $86.12 out of j's paycheck each week. We pay $86.12 a week for a family of three just to say we have health insurance, and we're lucky. We have insurance, and thanks to healthcare reform, it won't stop because I've reached some predetermined number by businessmen. It would be nice if this was our sole cost, but that's where the nickel and diming begins. We have a $500 deductible, which makes us ineligible for any pre-tax health savings plan, which are available for high-deductible plans. Then we have co-insurance, where the company pays 80 and we pay 20 of costs, up to $4000, which we hit early. For most families. This would be great for the average family, and often, having this co-insurance guarantees insurance companies never pay the full cost of treatment even though you pay 86.12 weekly. But we're not the average family, we are a sick one. The $4000 co-insurance bills will be flooding our mailbox by Feb. To be one of the "fortunate" Americans with health care, we will pay $86.12x 52 weeks or $4478.26+ $500 deductable + $4000 co-insurance equaling the MINIMUM amount we'll pay for health coverage: $8978.25. Of course, this doesn't include visit co-pays: $25 a specialist and $15 for primary care. It doesn't include co-pays for medications. Adding these two categories alone our health costs have reached $10000 for 2012. If only we were healthy, that $10000 could go towards one great vacation, but we are, so what does the insurance company do with all that money?
Sent from my Verizon Wireless BlackBerry

Friday, October 28, 2011

I did it again! I huffed, I puffed, and got published in the Huffington Post. A piece I wrote about coping with the loss of beauty and aging by not placing such a significant value on women's superficial attributes made the cut. It was featured in yesterdays "womens" section. See it at http://www.huffingtonpost.com/hillary-st-pierre/women-aging_b_1031358.html. While you're there I'd love to start accumulating some fans. Please hit the red heart button to get my writing and so we can chat openly via the post regarding my ideas. If you don't like me THAT much yet but like the piece, please at the very least, send it around, blow up the blogosphere, share it on facebook. You know what to do!
Sent from my Verizon Wireless BlackBerry

Aging Happens, Personality Helps

I did it again! I huffed, I puffed, and got published in the Huffington Post. A piece I wrote about coping with the loss of beauty and aging by not placing such a significant value on women's superficial attributes made the cut. It was featured in yesterdays "womens" section. See it at http://www.huffingtonpost.com/hillary-st-pierre/women-aging_b_1031358.html. While you're there I'd love to start accumulating some fans. Please hit the red heart button to get my writing and so we can chat openly via the post regarding my ideas. If you don't like me THAT much yet but like the piece, please at the very least, send it around, blow up the blogosphere, share it on facebook. You know what to do!
Sent from my Verizon Wireless BlackBerry

Recovering

It's been a week since therapy in NYC, and I'm still recovering. I've haven't felt so miserable and exhausted surrounding this treatment before. Even today, J, X, and I had our first family counseling (ha, I misspelled that as consoling session) today, and I couldn't stay awake. I was nodding off like I did as a kid in pre-requisite biology, except today I didn't want to! How our family interacts and collaborates is a huge concern of mine. I want x to feel comfortable with someone beyond me. Even now, writing this, I'm having trouble staying awake. Why the difference? The therapy could have a compiling/ cumulative effect in my body; one treatment, stacks on another, stacks on another making side effects more prominent. It could be this, or it could be I didn't get the rest I need surrounding treatment. I over extended myself actually. I coached x's soccer team tues, left early weds for nyc. Then that's where the pushing really started. We rested at a friend's, shopped, checked into Hope Lodge, then celebrated a friends birthday. We were out early Thurs. in chintown then up through SOHO, 15 blocks away. It was then my kidneys started to bleed, and they haven't stopped since causing me blood loss anemia. I've got the steak out tonight. Maybe I just need iron, maybe I need a transfusion who knows. Even the day after treatment instead of treating myself well and relaxing my grouchy chemo-riddled self played tour guide. Too much too early allows does this to me. I have some simple guidelines to keep myself healthy. They are rest and nutrition in the days before and after treatment. No overexerting. Prepare your body by pretending it's sick. Then, absolutely, take it easy with early bedtimes and naps. Snack frequently and don't over exert! But I did it to myself again, and I've paid by leaving pumpkinfest early from my grouchy attitude, migraine and side pain, sleeping all Sun, napping mon. And tues, making me feel completely useless. Finally weds. I was up for some domestic duties, but those bit me in the ass at that meeting. Oh well, I just can't roll like I did in college.
Sent from my Verizon Wireless BlackBerry

Monday, October 24, 2011

Financial Facts I wish I knew When I got sick

Dr. O'Conner gave me good news last week. This miracle-maker of a doctor could possibly keep me on my current medication, Adcentris, which has given me few side effects and allowed me to live a relataively normal life, for a whole year!

I could have a year to survive, and feel well too!

This is great news, for me, a person who has fought off Hodgkin's lymphoma for 5.5 years now against the odds.

But imagine if you received the same news today. Imagine if you heard my reality. Imagine if you heard this news:

Congratulations, I think I can keep you alive and feeling relatively well for the next year using this brand new $10,00 therapy. Thank goodness Obamacare removed that nasty 2 million insurance cap or you'd only have half a year with these expenses.

You'll have to travel to New York City every three weeks for check-ups and your medication. You may  wait 3 hours or more to see me, but it's absolutely worth the time since I have the most promising innovative therapy to keep you off the "chemo junk" that would disable you for life.

In the interim, you need to take a medication regimen of twenty medications daily including $150 eye drops and shots. You'll really need those eye drops too. They're the cure to graft vs. of the eyes, which will leave you blind and unable to realize the debt you're up to your eyeballs in.

You'll also need to have an oxygen concentrator and portable tanks just in case your lungs act up again.

Overall, allot a minimum of $1200 monthly for your healthcare expenses alone, because you'll be paying more than you get in social security disability benefits. Don't even bother having taxes taken out, because if you don't have money, you don't get treated. You need that money now, and with all your write-offs, you've paid your taxes and then some, but you'll never be seeing those expenses back no matter how knit-picky you are in keeping receipts. The government is pretty broke too, and there is no "cancer fairy" watching out to make sure you recoup those costs when you deduct them on your taxes.

You'll be lucky to get a couple $100.

Good luck surviving cancer. You may just have to opt out of paying for groceries and your mortgage alongside treatment, because as far as needs go, surviving is at the top of the list.

No, I don't think anybody else would take that as good news, but hopefully others can learn from the mistakes I've made or sidestep the horrendous practices that have nearly bankrupted me.

Ten Insider Tips to Avoid Medical Financial Ruin

First- Medical related debt does not go against your credit rating! Breathe a sigh of relief if you are hoping to purchase a car or home. Your medical information is protected by law, and so are your medical expenses.

Second- Know your insurance policies, all of them inside and out: short term, long term, life, and health insurance. Memorize the books and fight any charge that appears suspect. People will take the path of least resistance, and billing is no different   It's common practice to submit once to insurance, and if rejected, send the bill to the patient. Medical billing is difficult and the first submission is often rejected due to incorrect wording. My diagnostic PET scans were rejected because "restaging Hodgkin's Lymphoma" wasn't covered but "nodular sclerosing" was. Fighting saved me $3000 a scan.

Third- Failure to know your insurance policies and abide by them step-by-step can result in fees later, especially if you become an expensive patient that threatens the companies' return-on-investment. My long-term disability insurance company sued me for overpayment, because it failed to request my social security benefits to offset my wages. My husband put $8000 on a credit card while he sat vigil in the ICU beside my ventilated, near dead body. Ignorance of the provision is not an excuse. Again, the sole option is a payment plan. Take the payment plan, do not put it on a credit card.

Fourth- Avoid interest at all costs. We all hope we'll be fixed within six months, but if a six month battle turns into six years, those finance charges will start to be more than your weekly budget for groceries. Hospitals, clinics, medical supply facilities will all offer interest free payment plans. Take those, and if you're lucky, overtime the hospital will become tired of trying to collect on an old debt and right it off as a bad debt expense. When this happens, your bill is gone.

Fifth- If battling the bills becomes too much, and often companies profits are banking on the fact you will give up, that doesn't mean the war has to stop. Find a financial advocate immediately who will do the fighting for you. Cancer Connect http://news.cancerconnect.com/  will help you do just this. You don't need the stress of fighting your disease and fighting to get treated.

Sixth- If you made the mistake of using credit cards to pay for medical expenses, stop right now. It is illegal to deny emergency care for inability to pay. If you are in dire financial straights and need treatment, such as surgery or chemotherapy, talk to your doctor, nurse practitioner, nurse, secretary, social worker, human resource person, Someone will help you find financial assistance.
Then proceed just as with any other debt, If you have high-interest credit card debt, pay that off first.

Fifth- The worst thing you can do is ignore bills. Communicating with the hospital or clinic will keep the costs from going to claims. With the hospital, clinic, private practice, whatever, you can set up a no interest payment plan at a cost you can afford. I worked out $20 monthly to both the hospital and clinic I attend which I would pay monthly, same as cash, for hopefully the rest of my long healthy life.

Sixth- If your situation becomes so bad you can't pay the bills remember medical bills do not hurt your credit, when an agency sends your bill to "claims," they are essentially paying for someone to harass you. These calls are awful and annoying, especially when sick, but that is all they are. Turn off you phone. Get a second private line. Get caller ID, and if you get really angry, fire back.

Seven- Consider reporting the agency that sent your claims to the Better Business Bureau. Did they disclose legally protected, private medical information to a third party without your consent? This is illegal. You're protected among the strongest of all healthcare laws: HIPPAA.
But If you really want something fixed call your government representative. They are elected officials who represent you. They have the knowledge and connections to answer your questions. Though you may not speak directly to the official, you will speak with their specialists.

Eighth- Shop for more affordable and appropriate insurance. Yes, I said it: compare and save. The days of being tied to employer health insurance, COBRA, or a $20,000 out-of-pocket plan you don't need are almost over thanks to websites on-line that allow comparison shopping just like searching for auto-insurance. Ehealthinsurance.com is an internet site that compares different plans side by side online.
Even better, if you're too sick , tired, or busy to undertake the task of understanding and comparing plans that will suit you best, there are also sites that will match you with a person to assist you. NHAU.org, trustedchoice.com, as well as ehealthinsurance.com all provide help for people in need of sorting through plans to find out which suits the individual or family best.

Ninth- Don't settle for a one-plan fits all strategy. You can now also mix and match plans within families when purchasing health insurance. If you have one family member who will probably live until 90 with no other problem than some hypternsion, cut back a little on their coverage to take care of the spouse with arthritis, depression, fibromylagia, and a family history of breast or ovarian cancer.
Tenth- If you know exactly what needs to be done, what surgery you need or what treatment, you can now compare treatment costs between hospitals. Previously, prices and reimbursement rates were determined behind closed doors among businessmen with little consideration to the actual quality of the service. Better group rates were given to customers of certain insurance companies while patients paying out-of-pocket often paid more, shouldering the costs of any financial loss the hospital took in negotiations with the big business. Don't be a victim anymore, price compare.

Finally, if you're not just concerned about finances but quality of care as well, there is now  http://www.hospitalcompare.hhs.gov/ that allows you to compare the success rates of different hospitals.  can find a few hospitals that are within your budget for treatment, find the one that will best suit your needs, and get treated with confidence that you are receiving the best care at the best cost.


Still need to afford your medications?  You may be able to negotiate with your hospital to get a discount. You could also buy generics or compare pharmacy costs and ask for the better price. Most pharmacies have a lowest price guarantee. For over the counter medications, use coupons or rebates. You’d be surprised what you can get for free. If you’re in a huge lurch, you can always ask your doctor for samples or go to www.pharmacy.ca to buy the same medications for less money in Canada.

Remember, you are a consumer and health care is big business. We're in a recession, if that hospital or pharmacy wants your patronage, they're going to have to be competitive. 


Sunday, October 23, 2011

Creative Anxiety Coping Strategies for Those with Terminal Illness


Creative Anxiety Coping Strategies for Those with Terminal Illness
By Ryan  Rivera
Living with terminal illness is an already a difficult process as you handle all of the symptoms associated with your disease, but you have a responsibility to yourself, and your family, to enjoy every day you have left. One of the major factors that stands in your way is anxiety. It’s easy – natural, in fact – to feel anxiety when you’re diagnosed with a terminal illness.  Forty-four percent of all those diagnosed with a terminal illness experience noticeable levels of anxiety, and those numbers are skewed by those that have already sought treatment.
There’s no denying that anxiety can have a negative influence on your life. When you’re constantly worried about your health and your future, it can be difficult to enjoy the present. You need to find a way to handle your anxiety and panic attacks, whether it’s through counseling, relaxation exercises, or some type of creating anxiety coping strategy.
What Makes a Creative Coping Strategy?
Anything and everything can be a creative coping strategy. While a few examples will be illustrated below, the truth is that if it is a healthy activity that makes you feel more relaxed and content it is worthwhile. The only thing that limits you is your imagination, and your willingness to find coping ideas that you can enjoy. Examples of creative coping strategies include:
·       Art
Art can be a powerful outlet, especially when you’re dealing with chronic illness. Using your own imagination and a type of art you like (anything from painting, sketching, sculpting, etc.), you can show your affection for your friends and family, craft something that illustrates your  thoughts and concerns, and so on. In addition, you can make art pieces for those in your life that they can keep with them as memories. That can be comforting for you and the recipients of your art pieces.
·       Video Games
You may not really need to play video games – and you certainly shouldn’t play violent or thriller video games that could fuel anxiety. But video games are a great example of a fun and leisurely activity that can relax your mind. There are plenty of low-intensity, fun video games that keep your brain active and your mind off of your troubles. Video games, like comedic (non-violent/drama) television, are all useful ways to relax your mind and body.
·       Thought Poetry
There are two important things you need to do in order to cope with your daily anxiety. First, you need to keep your mind active, finding ways to not necessarily distract yourself, but to find activities you can enjoy as best you can. You also need to write down your thoughts, because our brains have a natural ability to fear forgetfulness, and when you have a terminal illness, you likely have many thoughts floating around in your mind.
Writing poetry or finding a creative way to write down your thoughts accomplishes both goals. It allows you to keep those thoughts in a permanent place, while also giving you something interesting to do. If you’re not fond of poetry, you can also try essay writing, and look for ways to turn your thoughts into something longer and more interesting.
·       Support Group Activities
Most support groups sit in a room and discuss the issues of the day. These support groups are very effective, and do provide you with a degree of social support that can reduce your overall anxiety levels. But support groups do not need to take place indoors. If you’re still feeling up to it, you can consider organizing support group games and activities, so that not only can you have a helpful ear – you also enjoy something fun and interesting.
·       Mindfulness/Relaxation Exercises
You may not always have the strength to go enjoy activities, nor the alertness to work on something creative. When you are unable to keep yourself physically and mentally active, consider performing unique calming exercises designed to relax your mind and body. There are several types of meditation, yoga, and relaxation strategies that are known to help your mind and body relax. Try deep breathing exercises, visualization, progressive muscle relaxation, autogenic training, and more – you may find one that is able to help you relax that you can continue to perform every day.
Reducing the Anxiety in Your Life
There is no doubt that being diagnosed with a terminal illness has impacted your quality of life. But you owe it to yourself, your family, and everyone around you to make sure it doesn’t affect you any further. Anxiety and panic attacks will stand in the way of enjoying every passing day, which is why it is  important you find a way to relieve your anxiety. Get counseling, go to support groups, and try to find creative and interesting ways to keep your mind and body active. It may be difficult to completely rid yourself of anxiety, but if you can decrease its strength, you can continue to enjoy as many days as possible.




About the Author: Ryan Rivera understands anxiety, and has written a great deal of information for those suffering from anxiety related to terminal illness at www.calmclinic.com>

Thursday, October 20, 2011

Worth the wait?

I waited 2.5 hours before I ever saw Dr. Owen Oconner. I'd been warned about his chronic lateness issue prior to ever meeting him, prior to ever accepting him as a doctor. This flaw is an imperfection I am willing to allow, especially since his tardiness is probably because his genius brain wondering, hopefully closer and closer towarda finding the cure for cancer (okay,okay, maybe I'm fantasizing a little). In my experience the best in the business will be late. They assess thoroughly, which means slowly. They take time to reassure patients and answer questions. This is a problem I'd been warned about. All the little tricks I know to reduce wait times I've tried and they failed such as getting the first appointment of the day or scheduling for right after lunch knocked some time off failed too. But those three hours were worth it when he came in, and after a quick recap of my history, announced that I could stay on Adcentris for an entire year and may see the positive benefits for years!! He canceled the pet scan scheduled for mon, pushing it back two weeks so we can see the effect of all four treatments. Having the scan on mon. Would only show the effect of three. From there he started talking about other complementary options stating that he wanted to keep my away from "chemo junk.". My heart melted. I've found a doctor that gets what I want. He even has a contingency plan for the scary "what ifs.". Doctors before all wanted to "take one step at a time" or if I was in remission they wanted to "what and see.". I hate being forced to allow cancer to grow in me with no plan. Not this guy he probably has back up plan upon back up plan, and if giving other people the same was what made him rhree hours late,I'm okay with that.
Sent from my Verizon Wireless BlackBerry

Waiting

Here I am. Waiting to see Dr. O in NYC. Three hours and counting, but that's what happens when you're seeing the best.
Sent from my Verizon Wireless BlackBerry

October's Treatment Trip

Once A and I made it in the door, I was happy to discover the hope lodge was a health mecca. The public 6th floor features a library, terrace, grand paino, flat screen tv with a wii and dvds provided, a yoga room, full kitchen and lounge area where different classes occur. People were learning to knit when we arrived, which was my hobby of choice during my first transplant. It was great because it can be done while sedentary then stopped and started again easily. It keeps your hands occupied easing the steroid jitters with something other than shoving food in your mouth. Learning, in general, keeps your mind stimulated, helping to fight the mysterious side effect of chemo brain. Knitting made me feel like I was still capable of contributing to the world and creating beautiful things, both ideas cancer robbed me of. Come to find out, that was just the scheduled event for that day. There are events everyday. Today A and I are getting a free dinner made for us, because that is they're having tonight at dinner. Thank goodness because money is tight. We packed up plenty of food to defer costs, but nothing replaces a healthy meal promoting healing. Had treatment not interfered, I would have taken part in the cancer societies' beauty program, which shows patients how to apply make up to hide any trouble spots and even gives up to $200 in free make up. The big surprise happened we finally made it to our room, a nyc room that is wheelchair accessable!! This makes me wonder iIf all the room are large for everybody to move arond in? With that and the friendly staff, the lodge has exceeded expectations.
Sent from my Verizon Wireless BlackBerry

Wednesday, October 19, 2011

Hope Lodge NYC

What a gorgeous first impression of ACS's hope lodge, which some of you may have seen on The Real Housewives of NYC, but I would have gone without the gorgeous waterfall, the granite countertops and benches, and the leather chairs to have electric handicap doors.
Sent from my Verizon Wireless BlackBerry

Road trip

Introducing.... Andrea my road trip chemo buddy. She even packed the snacks.
Sent from my Verizon Wireless BlackBerry

Tuesday, October 18, 2011

Suburgatory is Coming!

I said it once and I'll say it again, Linda Keenan's debut book, Suburgatory, the inspiration for ABC's hit comedy, is a must read for everybody, especially anybody who has ever felt that they're even just a little out of place, a little bit awkward, or that something is just not right where ever they are living.


Her hysterical musings designed in the style of The Onion have humorous headlines such as: Hot Nanny and Dad: Really Just good friends or Woman Shops at Walmart to Make Herself Feel Thinner.


Don't just take my advice, get to amazon and buy your own copy. 
http://www.amazon.com/Suburgatory-Twisted-Tales-Darkest-Suburbia/dp/0762780193/ref=sr_1_1?ie=UTF8&qid=1317914364&sr=8-1

Monday, October 17, 2011

Finding affordable health insurance

Finding affordable health insurance
What I envisioned when giving my very first speech to the NH Senate in Jan. 2009 has materialized! The 19 million American consumers in search of health insurance can now buy with knowledge through guidance from the internet.
Ehealthinsurance.com is an internet site that compares different plans side by side online.
Even better, if you're too sick , tired, or busy to undertake the task of understanding and comparing plans that will suit you best, there are also sites that will match you with a person to assist you. NHAU.org, trustedchoice.com, as well as ehealthinsurance.com all provide help for people in need of sorting through plans to find out which suits the individual or family best.
Options unheard of before, such as choosing plans separately for each family member to find the most cost effective manner of insuring all members, can now be explored easily and efficiently since all the information is now in one place with professionals available to guide you along the way.
Today is a great day. I can finally start celebrating the new age of health care where consumers can now make informed decisions regarding protecting themselves and their assets from a healthcare crisis.
If all this isn't enough, now patients can check the safety of the hospitals where they're considering getting treated too. See Today's article at http://today.msnbc.msn.com/id/44909622/ns/today-today_health/t/how-safe-your-hospital-new-website-lets-you-check/ or directly from medicare's website http://www.hospitalcompare.hhs.gov/
The future is quickly becoming the present where people can be informed consumers in their search for health and cures. Hooray!

My "healthy" face

I used to keep a few make-up items on hand each morning: concealer, for those under eye bags, long lasting lipstick or lipstain, to hide how pale and de-oxygenated, my lips really are, and blush or bronzer, to add some color, or health, to my clearly ill face. Of course, I have SPF moisturizer, but I don't count that. That's just safe hygiene. I dropped faking a healthy face when the prednisone blew it up like a puffer fish. I decided that everyone who mattered knew the status of my illness, and it'd be that much easier if they could just read that I had the miserables on my face. These past weeks, I'm happy to report, that I'm back to feeling well enough to fake healthy. My lipstick is back out again, and I'm desperately wanting some under eye concealer. It's just not in the budget right now since, here's the bad news, our home purchase fell through at closing due to the need for subdivision or lot line adjustment. The light at the end of the tunnel got snuffed out on that one. We're back to treading water financially. We signed up at mint.com to watch our cash flow carefully, and I'm now amazed we're not in more debt. That concealer will just have to wait though. On the bright side, I'm feeling well enough that I only care a little.
Sent from my Verizon Wireless BlackBerry

Sunday, October 16, 2011

How to work with your Higher Power to find meaning in life

I have adventured through life having faith that I'm safe in the most dire circumstances, whether it's in the middle of a gang gun fight (ahhh, college) or fighting for my life against cancer, I've had confidence knowing God (or your higher power) can cure any problem if I only: 1. have unwaivering faith in him while doing his work here on earth.
2.     SPEAK HIS WORD over my problems or in explanation of my problems. There is always a reason for suffering. We can't see due to our limited foresight.

3.  USE THE NAME OF GOD to stop attacks of sickness, violence, or any threat to life or livlihood, such as unethical government mandates.

4. Teaching the unknowing they too have the AUTHORITY and power to do these things. Jesus gave it to all of us. Speechless? Call on him, listen, and he will provide inspiration

JESUS walked this earth among the "common" people performing miracles for 3 years all within 8 miles of his birthplace.

He expects no less of all of us who know God's Word, because he knows we all are able to obtain these standards. The biggest obstacle to doing his work and facilitating social change is ourselves. Be sure you are part of the solution, not the problem.

To gaurantee change, Jesus preached Practical ministry. He needs EACH ONE OF US now to step out of our comfort zone to fullfil the "calling" inscribed in our hearts.

He had no church building. He had no computer, smart phone, or facebook.  Only his voice, hands, and feet, which he used to get His message out to the multitudes.

I encourage all of you to STEP OUT IN FAITH, and become DOERS of the work your higher power has inscribed in your heart. There you will find your purpose for life and happiness.
Sent from my Verizon Wireless BlackBerry

How to Eat Well and Cheap during Medical Travel


Check out www.pinkpueblo.etsy.com for  your
graphic design needs, especially classy &
creative clip art and site templates.
I think I found a way to eat well while traveling for my medical treatment.
I've been stressing over this weeks upcoming trip to NYC. I'm going with a friend as a caretaker and not my parents, who tend to baby me.
I've been adding up the costs in my head:
2 tanks of gas: $80
Parking for 48 hours- $80- 130 + tip
Without ever leaving the house, I know I'm dropping $200, MINIMUM, to survive for the two day trip, and this does not include meals.
Even McDonald's has gone up:
Highway food: $20
Meals During Stay. . ..
This is the big scary unknown, but I've discovered something I wish I'd participated in before.
Restaurant.com offers discounted giftcards, up to 80% off or $2 for $25!! Today just enter TOUCHDOWN in the coupon code box to get the deal.
www.hgracejewelry.etsy.com
for my endeavors: now
including handmade clocks
And the site makes it simple by allowing you to search restaurants by neighborhood. I can type in Hope Lodge's zip code or NYU's zip code or the community (Murray Hill) and see restaurants offering the discount within a mile radius, even though I wish they'd decrease it even more for NYC. A mile can put me in Brooklyn there!
Purchases are printable! Once you've completed your order, the gift certificate is at your fingertips.
Just one warning: be sure to read the sites and the merchants regulations carefully. The purchase of a $50 gift card often requires purchasing $100 worth of food with 18% gratuity automatically added. Your $8 meal (with discount) turns out to be $66 very quickly, a mistake I made. I think I'll be meeting my friends for Pacific Asian Cuisine Weds. night.
It's so important to understand guidelines and fees. My caretaker and I are now eating at The Pita Grill for a minimum purchase of $35 for a total cost of $12 + tip.
Thank you to all who have purchased my jewelry or donated. My funds for food are coming directly from that account.

Saturday, October 15, 2011

Occupy Wall Street's Sentiments are taking over the world as people take their frustrations with big business to the streets. Taiwain, the Philippines, S. Korea, and Australia are only a few of the countries who have joined calling for "true democracy." It's estimated 251 countries are participating this weekend, and protests are occurring in every state.
http://www.msnbc.msn.com/id/44912532/ns/world_news/#.TpltMxwdLd8

Friday, October 14, 2011

Creative Banking and Cost Shifting: Senior's Cures for The CLASS Act Failure

Opponents of health care reform are claiming victory as a portion of The Affordable Care Act, The CLASS Act, standing for Community Living Assistance Services and Supports, which was intended to provide optional long-term care insurance at an affordable cost, has been suspended for not having a sustainable route of implementation.

Sec. of Health and Human Services Kathleen Sebelius told Congress in a letter,“I do not see a viable path forward for CLASS implementation at this time” (http://firstread.msnbc.msn.com/_news/2011/10/14/8325174-obama-administration-halts-part-of-health-care-law). The CLASS acts inability to maintain funding was predicted in 2010 by medicare's actuary Richard Foster who said the bill was at a significant risk for failure as those who were ill or likely to experience severe health issues would sign up for the plan while the healthy would not, leaving no way to offset the cost of care. Sebelius' letter drew the same conclusion.


Claiming victory over the loss of a safety net protecting seniors and their families from huge medical expenses during their final years is not a win for any individual who wants to age with dignity, whether Republican, Democrat, or Independent. The loss of this bill, and the failure to find a sustainable alternative, is likely to result in the spending down of a lifetime of earnings and liquidation of assets to qualify for medicaid as well as medicare. Removal of The CLASS Act will only encourage the practices of spending down and creative banking and cost shifting from individual health plans and insurances to medicare and medicaid. 


Creative banking practices are a common but unspoken aspect of obtaining long term care for an elderly loved one that allows money or assets to remain in the family but not in the hands of the individual or couple in need of services. Actions may be the creation of trusts for family members, gifts of money or equity while still living, and/or transferring assets into the name of caregivers.


With the economic downturn Medicaid has all ready seen a dramatic increase in participants. Sixty percent of Americans now rely on some sort of government assistance to survive. With the economical forecast remaining grim, some economists claim we shouldn't expect changes until 2013 when the economy will either recover or fail irreparably, these figures aren't likely to decrease anytime soon. 


What is guaranteed is America's population will continue to age, requiring all the services and care needed to assist them.  Our current system of providing this care, such as long term placement in nursing homes or rehabs, is no more sustainable than the CLASS act itself. The ultimate problem is not with The CLASS Act, it's with the environment that has created a need for The CLASS Act and made it unsustainable. 


As it stands now, no other options for offsetting the huge costs of long term care for the later years of life have risen from our representatives though there are existing health care practices that can be provided safely and cost effectively that have not been explored. 


Expanding home care and/or altering rules for hospice, such as allowing patients to receive palliative "curative" treatment for incurable diseases, such as terminal cancers, is an option of safely providing care without the use of long term care or acute care institutions. 


Improving transparency and communication practices among providers has also proven previously to lower consumer costs. In a 1999 article, Political Economy attributed a million dollar drop in the cost of life insurance to on-line comparison sites, which allowed individuals to make informed decisions where they could not. Freeing health care professionals to communicate through the implementation of an electronic communication system along with electronic medical records all ready being implemented would theoretically do the same. 


Unfortunately these measures require a community social change alongside any healthcare reform to be viable. It's a change that will need bipartisan participation, people interested in policy not politics, and leaders that care about human equity not monetary assets. It's a change American's will either have to make willingly or be forced by reduction in options. All we know for sure now is that CLASS can't survive in today's United States. 

Thursday, October 13, 2011

Inside the Presidential Debate

I've been trying to post this through the week, but I've been victim to the world wide blackberry failure. Maybe the third try is a charm: I could hear the chants of ralliers as soon as I opened my car door in my prime parking place directly across from The Hop, Dartmouth College's Auditorium and host of the Republican Presidential Candidate Round Table debate focusing on the economy. I'd always imagined being outside on the green with a sign making my opinion heard before I grew up and realized true change came from the inside, which was where Heather, my twin, and I were headed to see the debate up close and personal. I consciously tried to open my mind. I tried to erase the distractions of Mitt's religion and the news report that he authored part of the health reform bill or Michelle Bachman's overstep when she attacked Rick Perry for mandating the cervical cancer vaccine by stating the vaccine is unsafe. I couldn't quite shake the idea that Ron Paul and Newt Gingrich were too old to be innovative enough to create jobs specifically in the technology sector. Rick Santorum, Herman Cain and Jon Hunstman were safe from preconceived notions since I didn't even know they were running. After checking my contraband blackberry and camera, we wheeled through security to our seats, soaking in the pomp and circumstance. Students with large "usher" or "escort" tags ran back and forth between men dressed in white button-up shirts and suits hobnobbing until it was time for the debate in the form of a round table discussion with a portion of time allowed for candidates to ask questions of each other. To my surprise, no matter what the question, the first time a candidate was addressed they managed to place their major agenda, primary plan of action or strategy for running on the table. Rick Perry made it clear he thinks energy independence is America's ticket to solving our economic woes while Cain touted his "999 Plan," which would impose a 9 percent income, sales and federal tax on all citizens, decreasing the current 16 percent income tax and a complete rewriting of current tax code. Rewriting tax code is part of the plan laid out by Michelle Bachman, while Newt Gingrich is clearly relying on his previous leadership, which is obviously respected among the candidates. I was wrong to have written him off as old and obsolete. Don't make that mistake, when Next spoke all listened. I must have had him confused with Ron Paul who sat looking like a character from a Rockwell picture and did not convey any new, innovative ideas of his own but dropped a long list of names he used to consult on the economy. He even jotted a note when Cain acknowledged his primary economist. Both Cain and Romney agreed on decreasing the Capital gains tax to improve the middle class, but Romney came out of the gate swinging declaring he'd start a "trade war" with China his first day of office for currency manipulation which has contributed to the collapse of the global market, a sentiment seconded by Rick Santorum. Romney kept swinging through the debate coming across eerily hostile in person, squabbling with the moderator and declaring defense as a priority while Michelle Bachman earned my respect with her wealth of knowledge, at times appearing to teach the other candidates regarding job creation, business planning, and tax law while also stating vehemently she would amend current tax code and immediately institute legislation to keep elective officials from "repaying" their campaign donors and repeal damaging previous legislation. Repealing legislation came up again and again as most candidates agreed on repealing "Obamacare" through allowing waivers immediately upon arrival, which spawned images of my empty bank account. Candidates claimed it has stagnated hiring among business owners. However, none offered a solution to the crisis in health care or the impending doom of medicare Instead shifting to job creation. Santorum plans to bring america back to the manufacturing mecca it once was, a thought agreed upon by all, with a plan to remove federal regulations and corporate taxation to lower the cost of production despite insiders claims the weakened dollar has brought back jobs from overseas and quality will keep it here. "Free trade" was the idea heard from Perry to bring jobs back while Jon Huntsman had a lot of great one-line comments on the economy, they lacked substance. Cain at least made his few agendas clear, appearing the most "transparent" of the bunch, a quality he plans to keep as Pres. In the knitty gritty debate of economics, what all agreed on was firing Bernake as chair of the fed and altering the federal reserves role or getting rid of it all together. As most debates go most of the ideas set forth lacked the ability to be upheld among bipartison scrutiny. Gingrich's opening statement called for a leader that could bridge the gap between parties and that is what we need right now which made him, surprisingly, a favorite of mine. My original thoughts had Romney as the best suited for office but now I my sentiments have changed. I Forecast the forerunners will be Bachman, Cain, Romney, and Santorun with the three best prepared being Bachman, Gingrich and Romney. My pick though? Its Too early to tell but I'll be keeping independent on my registration.
Sent from my Verizon Wireless BlackBerry

Inside The Presidential Debate

I could hear the chants of ralliers as soon as I opened my car door in my prime parking place directly across from The Hop, Dartmouth College's Auditorium and host of the Republican Presidential Candidate Round Table debate focusing on the economy. I'd always imagined being outside on the green with a sign making my opinion heard before I grew up and realized true change came from the inside, which was where Heather, my twin, and I were headed to see the debate up close and personal. I consciously tried to open my mind. I tried to erase the distractions of Mitt's religion and the news report that he authored part of the health reform bill or Michelle Bachman's overstep when she attacked Rick Perry for mandating the cervical cancer vaccine by stating the vaccine is unsafe. I couldn't quite shake the idea that Ron Paul and Newt Gingrich were too old to be innovative enough to create jobs specifically in the technology sector. Rick Santorum, Herman Cain and Jon Hunstman were safe from preconceived notions since I didn't even know they were running. After checking my contraband blackberry and camera, we wheeled through security to our seats, soaking in the pomp and circumstance. Students with large "usher" or "escort" tags ran back and forth between men dressed in white button-up shirts and suits hobnobbing until it was time for the debate in the form of a round table discussion with a portion of time allowed for candidates to ask questions of each other. To my surprise, no matter what the question, the first time a candidate was addressed they managed to place their major agenda, primary plan of action or strategy for running on the table. Rick Perry made it clear he thinks energy independence is America's ticket to solving our economic woes while Cain touted his "999 Plan," which would impose a 9 percent income, sales and federal tax on all citizens, decreasing the current 16 percent income tax and a complete rewriting of current tax code. Rewriting tax code is part of the plan laid out by Michelle Bachman, while Newt Gingrich is clearly relying on his previous leadership, which is obviously respected among the candidates. I was wrong to have written him off as old and obsolete. Don't make that mistake, when Next spoke all listened. I must have had him confused with Ron Paul who sat looking like a character from a Rockwell picture and did not convey any new, innovative ideas of his own but dropped a long list of names he used to consult on the economy. He even jotted a note when Cain acknowledged his primary economist. Both Cain and Romney agreed on decreasing the Capital gains tax to improve the middle class, but Romney came out of the gate swinging declaring he'd start a "trade war" with China his first day of office for currency manipulation which has contributed to the collapse of the global market, a sentiment seconded by Rick Santorum. Romney kept swinging through the debate coming across eerily hostile in person, squabbling with the moderator and declaring defense as a priority while Michelle Bachman earned my respect with her wealth of knowledge, at times appearing to teach the other candidates regarding job creation, business planning, and tax law while also stating vehemently she would amend current tax code and immediately institute legislation to keep elective officials from "repaying" their campaign donors and repeal damaging previous legislation. Repealing legislation came up again and again as most candidates agreed on repealing "Obamacare" through allowing waivers immediately upon arrival, which spawned images of my empty bank account. Candidates claimed it has stagnated hiring among business owners. However, none offered a solution to the crisis in health care or the impending doom of medicare Instead shifting to job creation. Santorum plans to bring america back to the manufacturing mecca it once was, a thought agreed upon by all, with a plan to remove federal regulations and corporate taxation to lower the cost of production despite insiders claims the weakened dollar has brought back jobs from overseas and quality will keep it here. "Free trade" was the idea heard from Perry to bring jobs back while Jon Huntsman had a lot of great one-line comments on the economy, they lacked substance. Cain at least made his few agendas clear, appearing the most "transparent" of the bunch, a quality he plans to keep as Pres. In the knitty gritty debate of economics, what all agreed on was firing Bernake as chair of the fed and altering the federal reserves role or getting rid of it all together. As most debates go most of the ideas set forth lacked the ability to be upheld among bipartison scrutiny. Gingrich's opening statement called for a leader that could bridge the gap between parties and that is what we need right now which made him, surprisingly, a favorite of mine. My original thoughts had Romney as the best suited for office but now I my sentiments have changed. I Forecast the forerunners will be Bachman, Cain, Romney, and Santorun with the three best prepared being Bachman, Gingrich and Romney. My pick though? Its Too early to tell but I'll be keeping independent on my registration.
Sent from my Verizon Wireless BlackBerry

Wednesday, October 12, 2011

It's a Twin Thing

Maybe it's that I stayed out past my bedtime last night to see the Presidential Debate, and that the fabulous recall of the debate I wrote will be outdated by the time my blackberry releases the final version.
Or maybe, it's that I took an extra 2.5 mg of prednisone and a whole lot of caffeine to do stay awake, so much that I couldn't actually sleep until 1am, walking up at 7am and not getting back to sleep after dropping X off making myself a walking Zombie today.
Last night at the debate, Heather and I met up wearing similar
purple/gray silk shirts and blazers. Even though steroids
have bloated my face, we still put on the same make-up
while dressing apart.
Or maybe even it's that I've had it drilled into my head that I need to drink, drink, drink to stay hydrated and we have nothing in the house I want due to our own personal budget cuts.
Or maybe it was listening to Republican's hypothetical Presidential plans to get budgets back in order by repealing "Obamacare" while I stress more about money than cancer
But I am in an astronomical funk, one I want to medicate into a sleeping stress free oblivion and it's coming down to a phenomenon few understand.
 It's a twin thing.
If you've heard the rumors about identical twins that can feel each others feelings, read each others thoughts, and know each other's decisions before the other one even makes them, I'm hear to tell you those weren't just rumors. It is an absolute truth that identical twins share a metaphysical bond that allows them to connect on a level unable to be experienced with any other person in the world.
I know. I'm a twin.
Celebrating Preston's 2nd birthday with a brownie.
We are what is known as "mirror image twins" or twins that can match up side to side, aligning where the egg split.
Face to face, my left dimple aligns perfectly with her right.
Where she was right handed and footed I desperately tried to be left.
I would even write my name backwards, starting from left and ending to the right, a complete mirror image of what my sister was doing.
As infants and toddlers we had a language of our own and were "talking" with one another immediately.
Growing up we couldn't own the same outfit, color, or style, because each morning we would walk out of our rooms at the same time, stop, and turn around to change when we saw the other had the same outfit on.
Our kids accidentally dressed in matching green shirts.
Just yesterday, unbeknown to us, we dressed our kids in the same green colors, only seeing they matched after picking up X from school.

Believe it o not, that was where the similarity ended. There is only so much likeness when you have a person who looks exactly like you.Or personalities were opposite.
Heather was a bubbly, smiling, social chatterbox while I preferred to keep to myself and listen. I liked to read. She liked music and dance. She'd get the party started while I laid back and enjoyed the ride.
We completed each other. Where she excelled I was weak. We were halves of a whole, yin and yang.
Not only could we complete each other's sentences, we could complete each others thoughts and night time dreams.
When we left each other for college I felt socially awkward because I had to consciously remember to finish my sentence. I had never been in a position before where I couldn't say two words and stop with Heather understanding.
I didn't even realize we had been speaking in half sentences our entire lives until I was 19 years old, even though people had tried to tell us for years. We were always in our little world where "You know Mike. . ." would send us into fits of laughter or "Heyyyyy. . ." would start world war three.
I also had to stop referring to myself as "us" or "we" whenever I did or thought something, because without Heather, I just sounded like a woman with multiple personalities, not one with a bond few others in the world are as lucky to have.
The family pre-steroids. Heather and I looked more similar
then. When trying we were still clearly identical. Our bro, Pat,
with wife Grace sit in the middle of our families.
I really miss those days.
We had plans for growing old together where we would live in a big house where I live now. I would be a professional working woman, a nurse practitioner, and Heather would be the homemaker, taking care of all the foster kids and adoptees we could handle.
It's been since Heather left caring for me after my first bone marrow transplant that we've shared the strong connection we had through our lives, and the bond breaking was intentional.
If it's difficult to be the caretaker, the loved one, or the family member of a cancer patient, it is confounded if you're the twin who is accustomed to calling asking "What's wrong?" and demanding you tell your secret before you've had a chance to dial the phone to tell anyone, or worse, the living replicate that would awake from a deep sleep screaming as an infant while I slept comfortably through my shots.
Heather was always the one who could feel my pain before I did or know a problem existed before I saw it.
Who wants that job if the person is in constant excruciating pain and the problem is an incurable cancer?
No, supporting me whole heartedly through one transplant was enough for a lifetime. It was imperative to break the bond, or at least, control it.
Even though I received Heather's donor cells in that first transplant, which did make me feel and behave more like her from the highly theoretical "cellular memory," we actually lost our twin connection as I continued to battle my disease, and she continued to live her life: moving, getting married, and having children.
Now, even though it's a miserable feeling of irritation I'm having on her behalf, I'm excited to be having it. It's been years since I've been able to relieve the physical stress of emotion from her, and she's had too much to bear for too long holding on to even a little of mine.



My blackberry is holding my posting on the debate hostage. Grrr. I'm going back to bed to sleep off the political hangover.

Tuesday, October 11, 2011

Update from Vic

Hi too all. Heather, Preston and Pierce are staying with us for the week. Preston Turns 2 today!! What a difference between the boys. They have very different personalities. Heather told me last night that Hillary ran them ragged yesterday. It was just a beautiful Fall day in New Hampshire. They went apple picking among the other stuff.I don't know if I had mentioned the Heather and Hillary are Mirror image twins. From the tests done for the bone marrow transplants it was determined that- let me try to get this right- That they have identical DNA but they were separated late in the cycle? and that caused them to be mirror image. Hillary has a dimple on the right Heather has a dimple on the right. Right handed and left handed etc. They share a connection that no one can break. It seems like they can share each others thoughts. What a great connection.I have been very worried to send out an email with all good thing as it seems to bite me back. Right now Hillary is in the best health we have seen in Years!! The new drug does not knock her down like the chemo has. She has not been tested to see if the cancer is gone yet but from past performances she will stay on this treatment. She does not have the symptoms that the cancer is anywhere to be found in her nodes. She is getting more active to say the least. She is more active in Coaching this year than she has been able to be.As you know Hillary always has something going. Today is the Republican Presidential debates at Dartmouth. Tickets to see it are impossible to get except if you are Hillary!! I don't know how she did it? If she is handicapped she gets to bring someone to help her. So she will be in the wheelchair and Heather is going also! The handicap section is on the stage also. They have the best seats in the house! Of Coarse both my daughters are Democrats so they are thinking up questions they want answered. They are working to frame the question, should they be asked so that they make a point. I don't know where I went wrong Democrats and Yankee lovers!!! I love them both anyway.So only good news today and High hopes for continued health. The recent great fall weather has certainly helped everyone's attitude. Tonight is a full moon so the debate should carry some controversy. Somehow I think she will be involvedThanks for all the prayers and well wishes.Vic, Nancy, Patrick and Grace, Allen, Heather Pierce and Preston, Xander, Jon and Hillary--
Five Eagles Design, Victor St Pierre
110 Great country rd Charlestown NH 03603
603-542-4915 Office
5eagles@myfairpoint.net 5eaglesdesign.com

Sent from my Verizon Wireless BlackBerry

Sunday, October 9, 2011

Predictions

It's started. My predictions from 2008 regarding the healthcare system are here. What was once isolated to overwhelmed, understaffed, poorly funded inner city hospitals has spread to what once were the safest places on earth.           . As a young nursing student practicing triage in The Bronx, I was forced to send bleeding, assaulted women back to the waiting room and people who came in to restart life through detox back to "square one" because until they have a seizure, that detox is not an emergency.  I saw patients grasping their stomachs and vomiting bile, but that still didn't earn immediate admittance.  . What did? Respiratory issues (we had a whole room where people could sit and take their nebs together), cardiac patients, mental status changes and severe injuries, the severity of which was judged by the triage nurse, the St.Peter of the golden gates that lead to health care. People waited huddled feverish, sick and coughing for 18 hours only to be diagnosed with TB.  A cough doesn't put you high up on the emergency list. Having HIV with weight loss does, but there's no law requiring anybody to disclose that info, even if it will infect everybody they come in contact with. . Now, my rural ER experiences have been comparable. I was told by several primary care and emergency care doctors that, in a time of need, I should go to a farther specialized hospital for me. One Sat., when I'd had it with x's constant fevers and vomiting leading to weight loss and dehydration, more fevers, tachycardia, muscle joint pain etc, I spoke with the dr. On call, who also advised us to go to the larger er.
Community hospitals are quickly becoming the crossing gaurds that stop and guide you until you can make it safely to the larger hospital that can keep up with technology and give the patient exactly what they need. What's going to happen to these smaller hospitals? Will they turn to ghost buildings? And If I saw this coming, who else did and why hasn't anybody tried to alter the process?
Sent from my Verizon Wireless BlackBerry

Happy thirdish bday to me!

I would have forgotten but not for my mom and husband: today is my second rebirthday, the anniversary of my second stem cell transplant when an international plane flew into Boston specifically to deliver me the fresh stem cells from Onkah, my then 26 year old German donor. It was big doins'. Very few people were privy to what plane was landing where with the DNA, the building blocks of life in the form of stem cells, that were headed to me. Wouldn't want some crazy anti-stem cell fanatic intervening and killing me. Three years later to the day, I attended an engagement party for my friends Andrea and Dave. I'm going to celebrate the life of Uncle Gene who passed recently of lung cancer, and my sister is coming into town for the week with her kids. I'm also still coaching soccer. Who would have guessed after all I've been through?
Sent from my Verizon Wireless BlackBerry

Face it

It's not even Monday yet, and this is how I feel.
Sent from my Verizon Wireless BlackBerry

Saturday, October 8, 2011

Round 3: fight

   It's been a long week, forgive me if I all ready published this:                                                           The nurse pokes her head in to my infusion suite, "Would you like ativan 1mg iv or by mouth?" She asks sweetly, "IV would be great." I say, as nonchalantly as ordering a soda from a wattress.  "and how do you feel about our complimentary massages?" She asks. "I don't know how I feel about them, I've never had one but I get the sense I'd like it." I said.   "A lot of people say it helps their neuropathy," she explains, "I'll sign you up."      .    Cancer treatment at NYU is feeling more like a stay at the drug spa than the hospital. I even grabbed a handful of mints on the way in as my father perused the k-cups for his 3rd cup of coffee, all very posh, really, and all mostly staples of a good cancer institute.                   . The Langone center is the most cancer patient friendly clinic I have encountered in my five year cancer clinic tour. It has a simple ottoman seat in the elevator for the exhausted patient. It has couches in the waiting rooms instead of armchairs so falling asleep is easy, and I've never encountered a line. At first arrival, there is valet and wheelchairs waiting, a must for convenience. Then the front desk gives you a print out of all your appointments and where they're located.  It's a place that knows its patients.                                             I've successfully completed My 3rd dose of sgn-35 (advertis, now, maybe) with a lot of help from 2mg ativan, to differentiate between side effects and anxiety, 50 mg of benadryl, 500 mg of tylenol and who-knows-how-much dexamethasone, all to ward off the awful allergic reaction from last time.                                   These were not only succesful in warding off a reaction, they were successful in knocking me on my ass until the following day. I awoke at 8 this am, at my dad's urging to get moving, remembering little to nothing from the night before.   .     I don't remember stealing the wheelchair to ride home in bc I forgot mine.  I do remember demanding to stop to buy fruit, but not paying or scarfing them down in the hotel room. Actually, I only hazily remember taking my evening meds and changing into PJs. Apparently, I was freezing with the shakes and talked dad into turning the heat up to 77 degrees while he Burned and I slept like a mummy. 

Sent from my Verizon Wireless BlackBerry

Friday, October 7, 2011

I am still exhausted. I'm only getting off the couch for visits, food, and Xander's activities. My synthroid was increased, which is my thyroid replacement medication. The thyroid controls energy, temperature regulations, etc. My thyroid failed due to radiation to my neck, but it probably would have failed eventually anyway. Hypothyroidism runs on both sides of my family. Oh well. We even took last weekend "off," laid around and slept. This weekend we have family party plans tonight, a trip to keene planned for Sat., and I have an engagement party on Sat. And a remembrance ceremony for my Uncle-in-law Gene. Uncle Gene married my mother-in-laws sister and lived in FL until he was diagnosed with lung cancer. It seems like yesterday he was diagnosed and given only 3 months to live without treatment and a year with. Only in his late 60s or early 70s, he chose to fight, but was met early on with complications. Uninsured, he sought care on multiple occasions for an infection after a medi-port placement and receiving chemo. Unfortunately, the infection went into his blood and infected his medi-port. Though he survived initially he never fully recovered. Please keep uncle Gene in your thoughts and prayers.
Sent from my Verizon Wireless BlackBerry