Come back with hair or not at all

DONOR NOTES Part Deux

I posted a little from my friend who was donating her stem cells after she signed up for the registry on MY BEHALF!! Go to http://www.marrow.org/index.html for more information.

Well, she did it! She's done! The cells are on there way to the patient!!! GO US! What a way to finish the year. Here is our latest correspondance:

FROM HER TO ME

It's done.....WE have done it. I will tell you, it was not as nice as I thought it was going to be! But its for the cause, and he will appreciate it!!! Lets just say, I ended up with a central line, "IJ" style. I truly have to say that the nursing staff and "ziggi" were ROCKSTARS! They put up with everything that I threw their way....they ended up being able to do the entire harvest in one day because the central line could go at a faster rate (versus the two day....as quote "he must be a big guy")....which I'm not sure was the best for me, but they told my parents "we dont know how well she would do with two days"....so I came home late on monday night. Most of my symptoms are gone, a little chest pain and fatigue is all that lingers.....getting better every minute!!!! SO WE did it! I truely would have never done it without your strength and support.....Thanks!
And THANK YOU....He is handsome, "Jack" that is!!!!! You really didn't have to!
Keep in touch......Heres to a Happy and HEALTHY New Year!!!!!

FROM ME TO HER

I'm so glad you got through!!! You are such a rock star. This is the best present ever! I'm so excited to start the new year knowing WE"VE DONE THIS!!Did you see my posting? You're big girl! How could the world not love you and your bad ass style?

I LOVE THIS GIRL! And so does some 42 year old man out there.

I'm thinking 2009 belongs to the Baldies!

Taking what I can get

“There are people out there like you, I just haven’t met them” -JF about me

Dr. Alyea found the one topic that WILL make me cry.
I think he caught that I was upset, but I changed the subject very quickly before I got pouty and started to sobbing.
I can’t wreck my tough girl image in front of the big guy.
I just couldn’t have another person who sees sick cancer patients day-in and day-out pitying my situation.
I think he knew I was upset, on some level, since he thought when I said “cavities” that I said “pouty,” as in when I said, “I’m getting cavities,” he said, “What?! Oh, I thought you said pouty.”
Maybe a miscommunication like this is just that, a miscommunication, but if it’s not, it’s him revealing what his subconscious knows through a “mistake.”
What is this delicate subject?
It’s the kids in my life, and how I’m missing out on raising them the way I would.
Nothing will bring me to tears faster than being forced to talk about how it is “iffy” whether I can even attend their ball games and “out of the question” to coach.
I, like everybody else, had an idea, dreams, and goals about how I would help mold the children I love. Those ideas have fallen by the wayside behind my illness and treatment.
It is the one subject that I don’t think I will ever stop crying about. It is very easy for me not to feel bad for myself, it is very difficult to look around the world, see people you care for, and know you are helpless to do what you want to care for them.
I’m dealing with this with technology. I keep tabs on their accomplishments via video camera. X and Lex can come home and show me the video. They can describe what they were thinking, what they did, and what they were feeling at the time.
I’ll take what I can get.
Want to see them, I’ll try to upload some videos for you.

As for my NEW YEAR’S EVE plans, I’ve navigated the loopholes, again, to be safe and have fun.
A few close friends will come by with their kids (these people qualify as "regulars" who I am in contact almost daily, so they get special exceptions). We’ll make homemade pizza, have the kids go crazy, maybe go to a neighbor’s bonfire (I can be outside without restrictions, but that sounds damn cold), and play some card games.
I’m learning how to play poker, thanks to Killy giving me a “Bad Ass Girl’s Guide to Poker” for Christmas. Check the picture out.

We'll also be making some SPECIAL DRINKS for me. I'm thinking of calling it a "Cancertini." Maybe, I'll come up with some other drinks too (non-alcoholic for now. Who needs liquor when I'm you're prescribed like me?), because I do like variety. I hear it's the spice of life.

I'll post up the "Cancer Cocktails" I make later.

I’m sending a whole lot of love out to the world today and for the rest of the year. How about you send some back?

NEW DISCOVERY!

I found a WHOLE area of Bean town with women like me!!!! I found them on Newbury St.
I didn’t even know Boston had an area like this!
I am loving the stores. Thank you Lamour (or C. Love) and Venetia for telling a girl where to go.
Clearly, I was only allowed to window shop. The loop hole in my restrictions is I am allowed to be outside. My new favorite pass time is people watching.
Window shopping is just depressing, especially when all the windows boast signs saying things like 60% off or CLEARANCE.
Clearance is probably one of my favorite words in the English language.
I do “prescribe” to the idea that looking good outside helps you feel better inside, and whoa, if any group of people need to feel good on the inside it would be us patients.
I have joked before that the only thing good about “this body” is what it looks like outside. If you’ve seen some of my nasty diagnostic scans or been privy to seeing some of the side effects I’ve experienced, you know what I’m saying.
My personality, my essence, or me, myself, and I are a separate entity from this idea, at least in my mind. I’m hoping people like my essence.
In accordance with my limitations, I do people watch with my mask and gloves on, but Boston is cold. You’d be surprised how warm those “accessories” keep me.
I never ran around NYC with a big sign that said “I have cancer” (i.e. my mask, gloves, and buzz cut), but in B-town, people are so supportive.
I’m really liking it there. I had some wonderful women give me some great supportive remarks and stories. If I could hug people (I can’t really due to restrictions and germs), I would have been showing some love. I shared my site, and I really hope they are reading!
If I was capable of creating my own tears (not so easy as a side effect of my transplant and GVH), I would have gotten teary eyed.
This discovery is exciting MOSTLY since for the first time since last March I felt almost NORMAL!
I felt like one of the girls again.
I had Brynn and Nicole in tow, and we were out on the town, behaving like twenty-somethings should.
This is a LUXURY I have missed so badly. I don’t have words for how hard it is to see people living life and not be able to join in. I don’t do the “outside looking in” thing very well.
I really didn’t know what I had until it was gone.
But it is coming back!! I can see the light at the end of the tunnel. I’ll begin easing up on my restrictions in the middle of January.
It is difficult to get up on facebook, see all the parties and events happening that I can’t attend.
Let me give you a resounding RSVP for this summer, but keep the invites coming. It makes me happy to live vicariously through my friends, and now that good things are coming in the future.

Treatment Hillary Style

Sorry for the delay. I am okay. HERE I AM AGAIN!
I spent the day at Dana Farber today with Brynn and Nicole, having some bonding girl time.
Being me, I decided a LONG time ago that if I had to get treated, if I was choosing to FIGHT, FIGHT, and FIGHT SOME MORE, and if I was OBLIGATED to be in the waiting area, infusion room, doctor’s office, etc., I might as well have a good time while I was there.
This is how treatment is going to go down Hillary style.
If I can’t change my situation, I will change my attitude; and thereby, I will positively affect the people and my surroundings (See Emotional Contagion by Elaine Hatfield and Cacioppo).
Cancer and illness does not always have to be all fears and tears.
If you have to be treated, you have a couple options: you can pout , cry, get angry, and complain, you can grin and bear it, or you can roll with the punches and take it like a woman (or man).
The employees at your treatment center are PEOPLE, why not chat them up and treat them like friends?
It has been proven expressing your anger and venting unnecessarily is NOT EFFECTIVE in making yourself feel better. If anything, it makes you and the people in your surrounds feel worse. Just like happiness can be contagious, so can’t tension, anxiety, sadness, and anger. The waiting, infusion rooms, and offices are so full of these emotions I could just about karate chop through them with my hand.
But I don’t, I laugh, smile, and joke instead. I relax and spread the cheer. We who are facing our mortality are vulnerable. We are scared, anxious, or angry, and there is no manual telling us how to behave.
I won’t be going down or out like that. I won’t allow what may be the last years, months, weeks, days, or minutes of my life to be plagued with sadness and fear.
That I can change. I can always change me.
This idea was based in part on the serenity prayer. If you don’t know what this is, it goes like this:
God grant me the serenity to accept the things I cannot change; courage to change the things I can;and wisdom to know the difference. --Reinhold Niebuhr
You would be surprised how difficult it is for type A control freak (now reformed, thank you, through what I like to call “cancer diversion therapy”).
I cannot change my situation. I cannot control my disease. I cannot change the progression of my cancer or the course of necessary treatment.
I can do the best I can with the knowledge I have, the rest is not up to me.

As far as my health, I look as good as I could. My labs are all fabulous. Previously, my eosonophils (if you don’t know just go with it) were elevated, which is a sign of graft v. host disease, but today, guess who has a normal eosinophil count?
My sister.
Noooo, just kidding, that would be me.
My magnesium is low (1.6 when 1.8 is normal). I’ll confess, this is because I keep on choking on those pills and spitting them out.
My BUN is high, which means I have to hit the bottle (as in water) a little bit more.
I have appointments. I’m scheduled for a PET SCAN on Jan. 12 at 2:30. I need to show up by 1pm. After this I see Alyea, and if the scan is clean, I WILL LEAVE WEARING A RED SOX HAT.
Yes, I said it. Yes, I went there. I’ll smile and post the picture too. A negative scan will put me in remission!
I won’t be celebrating to loudly though, restrictions and caution need to extend for 6 months post transplant and I have had many negative PET scans, but never a remission that has remained more than 3 months. I’m just warning you upfront.
I was told visitors need to be limited to “a couple.”
I sounded a little like former Pres. Clinton when I asked what, exactly, a couple was. FYI, it is two or three at a time, not because I didn’t know, but now you’ll hold me to it.
I also have an appointment with Melissa on Jan 6 at 11am (happy new year to me) and an appointment on the 28th with a dermatologist (have to keep my skin looking as good as it does).
That’s a wrap for my immediate health update.

RIGHT TO LIFE

Again, on the news people are risking their lives because they have no money for their health, such as insulin for diabetes.
Thank NBC’s nightly news for the following information from Dec. 29, 2008.
Jon stepped up in front of the camera to announce he stopped taking his medications for his diabetes due to his inability to pay for both his medications and food or clothing for his family.
One week later, he ended up emergently admitted to the hospital.
Eleven percent of Americans say they’re cutting back or splitting pills they are prescribed.
NBC Nightly News gave examples from all over the US.
The United States is also seeing a sudden drop in prescriptions, a phenomena that has NEVER occurred in history. There is also a spike in canceling doctor’s appointments, 36% of Americans have postponed healthcare due to inability to pay (Check to the right, people. See my list of blogs. Remember KARA, me, my husband, Sam, and on, and on, and on).
Now, as a result in people’s failure to maintain their appointments, there is a spike in emergency health care, ultimately raising health care costs for the individual, but if it is a choice between food, heat, and shelter, many are willing to take the risk and pray their health stands up.
This is clearly a choice made among adults who are caretakers of children who need to be fed and clothed prior to a parent who believes they can survive without their prescriptions, follow-up visits, etc.
This, I’m sure, puts providers in a difficult position where Doctors are making compromises in care based on patient’s personal financials.
Professionals KNOW what a patient NEEDS, but if they’re sitting in the exam room and a person is stating they CANNOT afford what they should have, something is better than nothing, and professionals will concede to a second, third, or fourth rate medication for a patient to receive ANYTHING affordable.
From what is happening in the United States today in health care as a repercussion of our failing economy, I think it is CLEAR health care is a NEED and a RIGHT (remember, we all have the “right to life, liberty, and the pursuit of happiness”) in America.
I beg and pray that this problem is solved BEFORE it evolves into a national health crisis alongside the economical disaster and instability we are all facing. You may want to pray too.

QUESTIONS, anybody?

Here is an email I received from the Obama-Biden Transition Project:

We recently launched a new feature on Change.gov called Open for Questions. Thousands of you responded, asking 10,000 questions and voting nearly a million times on questions from others. Now that we've answered some of the most popular ones from the last round, we are open for questions again. Ask whatever you like, and vote up or down on the other questions to let us know which ones you most want the Transition to answer. Get started now at http://change.gov/openforquestions.

Show some love for our government, but please, ask the questions we all need answers to.

Don't want to ask them yourself? You know where to go to ask get them asked for you, just holla tha Hill at hill.stpierre@gmail.com

Mathematical Wait Time Solutions

The LARGEST, LOUDEST, across the board complaint I have heard in treatment centers all over from NY to CTown to Boston is the LONG WAIT TIMES.
In BX, I was almost attacked by a marine father who had waited 6 hours for the pediatric EMERGENCY DEPARTMENT to treat his daughter, who had broken her pinky toe a week earlier.
He charged at me because I let in a set of three year old twins with respiratory infections, one of which was experiencing respiratory retractions (when the chest rises unevenly, a clear sign of serious distress).
I tried to explain that an ER is not a restaurant. It is not first come, first serve. It is sickest first, and a broken toe (which there is nothing anyone can fix, except for the person who needs to rest it) that happened a week before (obviously, not an emergent priority) may wait a full day.
Before I could get the word “triage” out however, his face twisted and he lunged at me.
You better believe I slammed and locked that door in his face. That ER pays well specifically due to “occupational hazards” such as this, but not that well.
Yes, a marine was going to attack a twenty-one year old, 100 lb., female nurse over a long wait.
That’s serious.
Emergency personnel, as well as many others in the world, do receive messages from their subconscious which is a culmination of all past experiences and often result in their “gut” instincts to provide care.
I do not undermine the power of gut instincts. I’ve gotten by for a very long time on these, but there is also a personal level in accordance with past experiences and the person’s perception of these experiences, which can be argued as the cause for HUMAN ERROR (See Gary Klein’s Sources of Power or Malcolm Gladwell’s Blink).
My recommended solution for this problem of wait times, as well as minimizing the margin for human error: computerized algorithms.
This idea could also cure time consuming thought processing by professionals.
Problems may be simply be taken out of the equation (Ha, get it. Algorithms. Out of the Equation. It’s a geek joke).
How could this be done?
Maybe, by collecting case files and data from patients around the United States who present with major common symptoms (i.e. chest pain or dyspnea) could be fed into a computer program designed to take the information of presenting symptoms and calculate the final official diagnosis, course of actions and outcomes in each patient to predict, based on previous patient experiences, which subjective symptoms are most ominous and require the most intensive intervention.
Clearly, The presenting symptoms, disease progression, necessary medical intervention and final diagnosis would need to be inputted to receive averages representing a course of action from previous patient experiences.
This task would save both time and money by taking the guess work out of treatment.
The final product, which would be the standardized course of action, should look like a treatment tree.
Think this is genius? I do, but it’s not all me. See “Blink” by Malcolm Gladwell. I’m just explaining the benefits from both views of health care.
The benefits would include less time for stressed Drs/NPs/Pas to make judgment calls based on past experiences susceptible to human error, which inevitably leads to less out of pocket expenses for hospitals per patient treated.
IS anyone following me here? Because I’m not even sure I’m following myself.
Hospitals will spend less money to treat each patient since guidelines will already exist, all that would need to be done would be to take a pertinent health history which includes a set of standard questions that should provide the appropriate information to guide a professional to the tree which would dictate treatment.
Think this is a CRAZY, OUTRAGEOUS idea? Let me give some information, stats, and numbers to back me up.
Cook County Hospital in CHICAGO began this experiment in 1996 under the supervision of Brendan Reilly, who was previously an associate professor at DARTMOUTH UNIVERSITY.
Cook County Hospital in the hood sounds like a world away from the gorgeous, sprawling surroundings of Dartmouth.
Reilly, in “Blink” described the ER as a “system with constrained resources.” Chest pain patients in particular were “resource intensive.”
So chest pain patients were treated as they are in most ERs. Professionals would “gather as much information as they can and make a guess” (Gladwell, Blink, pg. 129). With the system being what it is, professionals err on the side of caution, a very expensive decision.
Reilly began to develop “statistical rules,” feeding cases into a computer to determine commonalities to guide treatment.
The end result, known as “Goldman’s Algorithm” (after Reilly’s idol cardiologist who worked with mathematicians on this idea in the 70s), was proven 70% BETTER than the previous method of checking and guessing (See the study publication http://www.medscape.com/viewarticle/417246)
Professionals “guessed” right between 75-89% of the time. The algorithm guided appropriate treatment more than 95% of the time.
What an algorithm could do is take the stress and sponteinity out of dire situations where judgment calls may be skewed by unnecessary factors (such as a screaming wife or a marine that is about to hit you).
I could go on about this, but basic moral of the story, indentifying an underlying pattern among patients could guide care QUICKLY, EFFICIENTLY, and AFFORDABLY.
It’s a mathematical solution. This is obviously not a cure all, but I do think it would be a sufficient start.
FYI- Brendan Reilly is now in Windy City politics. He says he is a “man of the people.” To read about him see http://www.windycitymediagroup.com/gay/lesbian/news/ARTICLE.php?AID=14090 To contact him go to http://www.reillyforchicago.com/index.php
He is also technologically savvy. He has a profile on LinkedIN, the world’s largest online business network.

Coming Through For You

“One person can make a difference.” –John F. Kennedy
Is your girl coming through or what?
I said, at some point, I would link up the survivor/patient network on the world wide web.
If you know nothing about me, I’m a woman that comes through on my word.
You want stories? I got your stories, straight from the source.
Did you have any idea there were so many of us in the world sharing our stories?
I don’t think so, because I didn’t either.
When I started this, I never imagined the ranks I was joining.
It’s time to band us all together in our similar battle.
There is more than one common theme beyond the obvious loss and grieving, most of us are damn funny! Just check out the titles” “Cancer is my bitch.”
I’m thinking most of us did what I did. I took inventory on what I had to offer the world in the presence of my disease and resitrictions. I wanted to a purpose, but good jobs are hard to come by when you can’t be near people.
We’ve all found the socialization teaching loop hole. GO CANCERVIVORS!
First things first, please check out Kara’s blog, and consider donating directly to her. You can do so with a credit card on her site. http://karalees.blogspot.com/
She is a single mom in need of a caregiver for her and her daughter to undergo treatment.
What she is saying is true: most organizations that have helped us previously are now BROKE!
The Leukemia and Lymphoma Society announced recently that they will no longer have a “Co-Pay Assistance Program” due to lack of funds.
You can know add another $5000 to my tab of health care costs.
I, however, am not in her unfortunate position. She has no support person to rely on.
If there was a study done on women in situations such as hers, my guess is the results would say that this subgroup has a higher incidence of death from her disease.
Stress can be a killer in the presence of cancer.
Don’t let it happen. Check out her child, and don’t let that baby grow up motherless!
Patients: if you have ever felt alone and like you were the only ones experiencing the weight of life you are, now you know where to find those like you.
This information and reassurance is priceless. Need a support group?
No need to leave your home at a specific time to go to an uncomfortable room and share your tears face-to-face. That structure is not for everybody, it is certainly not for me.
We can know link up at 3 am if that’s how our bodies feel! Fabulous.
I will not be attaching EVERY SINGLE BLOG that I can find out there right now, but hopefully someday I’ll get to it. Keep your fingers crossed.
Here is to an educated, empathetic New Year.

The BEST Christmas Present Ever

My coworker friend gave someone THE BEST CHRISTMAS PRESENT EVER!!!
We didn’t know each other well when we worked in the same departments, on opposite shifts, but since my diagnosis, she’s thought of me
In MY HONOR, she signed up for the NATIONAL DONOR REGISTRY in MAY, which is NATIONAL TRANSPLANT MONTH.
While we’re on the subject, there is a routine Bone Marrow Drive in Springfield VT every May. I think it is at the Dean Center. This is where my girl went to donate. Remember this.
There was a very successful drive at KEENE STATE COLLEGE. See the article at http://keeneweb.org/newsline/2008/12/02/bone-marrow-drive-a-huge-success/
KSC is special to me, as my father, sister, and Frank are alumni, as are Tad and Uncle “Scottie.” Actually, I could really keep going here. I did spend one semester there when I graduated early from high school, and I did play soccer there my entire life, so maybe I can be considered alumni too?
Large colleges EVERYWHERE should hold drives. Stem cells are OUR health future.
In 2001, on Sept. 11 or 12th, CNR bused girls willing to donate their blood for survivors of the attacks. I, of course, piled in with my girlfriends and headed to North Shore (Hi CB). After donating my blood, I spotted the GET ON MARROW DONOR REGISTRY box, and immediately signed up.
After this, CB, my room mate, and I also went around the group of twenty girls (I think Roxy and Lindsay were in on this too) and took over their paper work to check THEIR boxes.
At the time, I had no idea there was a HUGE lack of minority donors in the registry, which is a big time social health problem for any subgroup other than “white” in blood cancer care.
The victims of Sept. 11 did not need our blood, if you want to know the truth, most were all ready dead, providers rushed to work and waited for ambulances with live victims that never arrived, but the registry did need our blood samples.
When I began my search for a donor, I received in call in JULY 2008 from the Bronx branch that I had hit as a match in the registry and would I please call to arrange MY donation.
WHOA. Imagine the shock when I told the girl that the woman who needed the transplant was me, and please remove me from the list.
THAT IS HOW SMALL THE SELECTION IS!!
If I was in charge, I’d gather my HOT girlfriends of all ethnicities, and I’d post us up at Howard UNIVERSITY, maybe during homecoming. Maybe cellular memory is a VERY REAL THING, and if you can have the smarts to get into Howard, and we need the cultural diversity in our registry, that is the kind of marrow we should be spreading around.
I could see a college tour. There are some great GREEKS out there that could take up this cause. You should see how they could “stomp” out cancer.
Anyway. . . .
So my friend who signed up in May was called in September to donate. At least, I think this is the timeline. Here is our correspondence. She tells me how it feels to be on the “donor side” of this process, and I ask her questions and tell her what it is like to be the patient:
****FROM HER TO ME****
Just wanted to let you know that WE are donating soon to a 42 year old male. "Annie" from the marrow.org "hinted" that he was from the Northeast area without saying of course!! I have my physical exam this week at dhmc and then tentatively scheduled to donate on Jan 6th via aphresis.
So this is my email address...catch me anytime! Your blog ROCKS!! We all read it often...and you have reached Fort Myers Fla now...just to let you know!!!!
I also want to see what you have to say on the use of Filgastrim (Neupogen) for healthy people in pre-donation doses for aphresis. The FDA does not approve it for healthy donors donating to strangers, but does approve its use if you are donating to a sibling....ODD eh? My general understanding is that if I have pre-cancerous cells in my body, that I will increase those as well as healthy cells---mainly WBC's.....not anywhere else in the body...so i understand anyway. Do you know anyone I can talk with about this???? Dr. West and Laura suggest that I talk with you....as you are a walking encyclopedia and medical dictionary all rolled into one!!! SOOO little lady with big heart....and gigantic spirit....TEACH ME!!!!....or point me in the right direction!!...what do you think???
So here is my ending ha-ha.....Whats the difference between a pick-pocket and peeping-tom?
One snatches watches, the other watches snatches!!!!!
I know, I know....lame...but I bet you weren't expecting it!!!!!
Email anytime...call anytime....
BLOG ON sister.....WE LOVE IT!!!!
PS-I thank you ....and so doesn't this 42 year old Man out there!!!
******FROM ME TO HER*****
Can I post a little about you?? You can write about you. I think your notes are great. This is great!
If you're all reading, are you making your broom hockey team?? I know you're in on this! It is BYOB and tailgate parties are allowed. My house is 30 seconds down the street.
I need to write a letter to my donor, and I have no idea what to say. I haven't done it yet, and I don't know why. I need help.
Let me ask my providers your questions. I'll call or email tomorrow and let you know. Let me know about posting. Much love.
*****FROM HER TO ME******
Great to hear from you!!! So I just got home from DHMC...all of my pre-testing is now complete! I passed with flying colors, but my WBC count was a smidgen high....so they will need to repeat it in a few weeks. And when i mean a smidgen, I mean 10.8 versus the 10.4 that they want. So it's a GO. I go in on January 6th and 7th....its a 2day thing as it is a man and they require more.....may he get my thunder thighs and irish temper!! AND dare I say that I was talked into a Jugular central line if needed. My veins are "iffy" and they won't really know until "D" day (what I'm calling "donation day"). I talked with some amazing people there today...they answered all of my Q's. Neupogen only affects the blood cells. My Nurse is IW, NP is BK....they are fantastic!!!
(FYI, FROM ME, both have taken care of me too! YES, THEY ARE GREAT! Go to Norris Cotton, people.)
Broom Hockey????....tell me more....I dont know much about it....but if its hockey I'm game!!! Is this the annual Z thing I have heard so much about? MAKE IT a fundraiser....sounds perfect!!!! and it has a bonus...BEER! (actually---I'm a Jack fan)!

(FYI, FROM ME, I have been a LIFELONG jack and coke girl. I do vogue drinks, but always go back to the classics).
Write anything and everything to your donor...she'll be amazed and you'll make her day! Spill it out....
Alrighty Hill....I have to go see my sister...(arent they awesome).....Have a great day.....Keep Bloggin'!!!!! You can post anything, absolutely!
****FROM HER TO ME****
Hey Hill!!!!
You're back HOME!!!!!!
So I just want to keep you updated on OUR donation.....I go into today for another round of blood tests....WHY? you ask......OH cause WE are starting our first neupogen injection on Christmas morning.....yes....as in one week from tommorrow! Then the procedure will be done on the 29th and 30th of Dec. They called me last week and they needed to bump it up eariler for the recipient.
So thats where we are at....I will keep you posted!!!!
Merry Crhistmas!!!! Love life and laugh often!!!!!!
Lots of love....

*****FROM HER TO ME******
Merry Christmas!!!
Just letting you know....WE started today!!!! First dose of neupogen is in......They take my marrow on Monday! Lets hope all goes well!!! They made an appt for central line insertion for me (as my veins are virtually not there). Then they informed me that the "dhmc policy and procedure" is that I have to stay over night if I get the central line....which just shocked me!!!
Anywho..... So WE are giving on Christmas today....couldnt think of a better day to start!
Merry Christmas!!!

Bet you all didn’t know how this went or felt. I didn't either! So exciting.

Check the link in my welcome message for more information on donation.

Golf

A man staggers into an emergency room with a concussion, multiple bruises,two black eyes and a five iron wrapped tightly around his throat.Naturally, the doctor asks him what happened. Well, it was like this",said the man. "I was having a quiet round of golf with my wife, when at adifficult hole, we both sliced our balls into a pasture of cows. We went to look for them, and while I was rooting around noticed one of thecows had something white at its rear end. I walked over and lifted up thetail, and sure enough, there was a golf ball with my wife's monogram on it,stuck right in the middle of the cow's butt! That's when I made my bigmistake." What did you do?" asks the doctor."Well, I lifted the cow's tail and yelled to my wife, 'Hey, this looks likeyours!'. I don't remember much after that.

Pierce with Attitude

St.Pierre Style Christmas

Christmas Day at Memere and Pepere St.Pierre’s was always special.
A three bedroom farm house is barely the place to raise thirteen children, but when those children get married (equaling twenty-five adults. I can do math, not all are married.), and most of those children have children (I have fifty-six cousins), it’s just a recipe for holiday chaos.
Obviously, some elbows get thrown for food. Being little, I always had some help from the bigger cousins. A spot to sit was more of a commodity, and I’m not talking about a chair, I’m talking about a place on the floor.
Presents, we all got one. For the grown-ups, a scratch or lottery ticket or a card with five dollars, for the kids, we always had one present.
What I miss that I cannot believe was lost in one generation is the process of opening these.
If you have ever been the recipient of a present from me, the giving goes like this, “Oh, Hillary. Thank you so much. I really like it.”
Then I say, “Great, I’m so glad you do. . . . .Are you going to use that packaging, because I recycle and if you’re not I want the bag/wrapping/ribbon/bow/tissue paper back.”
This is a compulsion I can’t stop. I don’t care who you are, we’re not about to waste some perfectly good wrapping by throwing it in the garbage. I don’t care if it is less than a dollar.
It doesn’t even matter how rich or powerful you are. You could have millions, but I would still like to save my dollar.
By now, my friends open the presents, take what I’ve given them, and immediately give the wrapping back.
I physically cringe if this doesn’t happen. Sometimes, I can keep myself quiet if it is not my place to speak up.
This started with my St.Pierre family. We could reuse the same paper for years. I forget what the record was. I would have to ask. It was a game.
This was born of necessity, my grandparents were poor, but there was also the aspect of not wasting a product that was still perfectly good. I thought this was great fun.
I don’t see this happening today. I don’t understand why. What my grandparents did when they started having children in the 40s was lost among most people by the 90s.
Now, it is coming back.
I recycle wrapping. I wrap in fabric or the pashmina scarves I give as presents.
I wrap in newspaper still. I love to wrap in newspaper in different languages (Chinese or Arabic) and tie it with ribbon. This is cheap and stylish. I used to grab these out of the recycling bins in NY or ask the men on the train who were done reading them. Often this was difficult to do, since these men barely speak English and the requests are kind of weird.
Remember, we are talking about me here.
I don’t know why this art has been lost. It is an art.
I have vintage silk scarves that people give to me at estate sales, because it is lost on them what to do with a piece of history from a person who has passed. I tie up presents with these. I make them look like a bag. It is free vintage wrapping and equals two presents in one. I have a drawer full of these, all free.
I think this is fun. I feel like a broke Martha Stewart. You’d be amazed what I could do with just about nothing.

Check out http://www.ciwmb.ca.gov/publiced/holidays/NoWaste.htm for more ideas. This will all work for birthdays to.
If you have never wrapped and given a child under two bubble wrap or Styrofoam “popcorn” packaging as a present, you may not understand me. A little creativity goes along way. Kids will accept a decorated box as a house or a rocket to play in, and this is just about free. Poor does not have to equal disadvantaged. It just requires a whole lot of creativity.

As for adult presents, I have made my own aromotherapy candles and poured them in free mason jars. It's very easy and cheap to buy oils, wax, and wicks. I have also made wine and bottled them in vintage bottles from thrift stores or that I've dug up on my property (obviously, they have gone through and EXTREME germa-phobic cleaning process).
Have fun with what you have. Everybody, everywhere, count your blessings today. Believe it or not, you do have blessings.

Just to make something clear to some of my family, and you know who you are, just because the wrapping is reycled does not mean the present is!

Now, I'm going to go back to napping like I am supposed to be.

YAY It's the Holidays

Hi All. I'm writing to send you all love and good tidings. Have a merry Christmas eve, or to be PC, a Merry Christmakwanzahhakkah. A happy belated solstice too. If you happen not to not celebrate any of these (I love you Laurette and the Desorosias Family!), I hope you just have a really good time with your family and feel the holiday cheer in the air.

The beautiful thing about this time of year is the possibility exists to respect the basic priciple of enjoying one another's company without ruining it with arguments regarding the story.

What everyone is saying is basically the same: love and cherish each other.

In college, I had a hindu housemate. She would give me gifts from her culture when it was time for her celebrations, and she would accept my Christmas gifts. This had little to do with religion and more to do with a mutual respect for each other's culture.

I'm sending a big thank you out to Claremont Family Practice and Rite Aid for taking good care of me.

I'd also like you too see my favorite present (check the picture) and a picture of me post Brynn and Colleen's gift of make-up lessons. At 26 years old, I do not know anything about make-up. It was time for a lesson. I'll post the video later, recently blogger has not been accepting my videos, pray for this to change, but you can have a picture.

MUCH LOVE and have a Great Night.

Me

Looking back: Christmas 2006

I keep looking back and remembering college to avoid looking back at where I was at this point two years ago.
TWO YEARS! That sounds like such a long time to me. You have to know, I seem to have time commitment issues. I did graduate with a bachelor’s degree in nursing in 3 years (I actually matriculated and graduated in 2.5 years). I would have graduated from high school in 3 years if I wasn’t a soccer player. I really do not play well within restricted schools of thought.
I need my experience and then I need to move on, but my cancer just keeps going and going and going.
So, due to what happened two years ago, I fear Christmas for X is irreparably damaged and associated with feelings of anxiety over the possible loss of me.
At three, I was hospitalized for the first Christmas season he remembers. I had been undergoing chemotherapy treatment since September to prep myself into remission for the transplant from my sister’s marrow.
I would get into remission, then reoccur before I was healthy enough to move on. I had been plagued with serious health problems for the month previously.
My downfall was a regimen called “mini-beam,” which leaves you feeling well immediately after, but later presents its symptoms.
I must have missed this part of the teachings because when I left the hospital, I felt great and it was Christmas time.
I brought Xander to Santa’s Land where he rode the rides and played. We went out to pizza. We cleaned the basement so we could play basketball and baseball during the winter.
Then the Monday before Christmas I started to not feel so well. I was seen and given something. The following day it got worse, I called my NP but said it wasn’t necessary to be seen. On Weds. I spiked a fever and dragged myself to the ER.
At the ER all hell broke loose. I will spare you the details.
I needed blood transfusions, platelet transfusions, antibiotics, and morphine for the pain, A LOT OF MORPHINE.
My parotid glands swelled to a point so painful I couldn’t swallow. My abdomen swelled to a point bowel surgery was spoken about. I had nystagmus, an ominous sign of neurological involvement. I took so many pain meds I couldn’t hold a conversation but could scream in pain and ask why my patient controlled analgesa (PCA) was not working.
It was not working since it was set to dispose 2mg of morphine every 5 minutes and my pain resumed at 2 or 3 minutes.
I couldn’t/wouldn’t move. I think this was almost the most miserable I have ever been. It was not the point which I was most scared for my life. That was reserved for later when my lungs failed.
Either way, X came to visit me Christmas Eve. By this point, I had spent months in the hospital. I had spent more time as an inpatient than I had at home with him.
He walked up to me, held my hand, and told me sweetly, “You can spend the night at my house if you want to.”
My son invited me, on Christmas eve, to a sleepover, at “his house,” which was actually “our house,” except I hadn’t lived there for months. He didn’t remember me as a mother who had ever lived with him.
I tried to explain why I wouldn’t be spending the night, and he nodded in compliance with my decision.
When my family left, I hollered for my meds, and cried for as long as I stayed awake.
This was the first time I had ever had my heart broken.
On Christmas Day, I was allowed to sign myself out with a waiver to spend time with my family at home. The waiver stated it was not recommended I leave and I understood that I would be responsible for myself.
Thanks to some wonderful doctors and nurses at DHMC, I was able to spend a couple hours at home.
I thought, “What’s one Christmas in the greater scheme of things?” X may not even remember.
I don’t know why I need to tell this now. My writings are as much of a diary and confessional as they are for the greater good and comfort of others. Looking back, this was one of the worst experiences I have ever gone through.
However, like I tend to do, I recovered from my symptoms and the health problems I experienced, and to my knowledge, these happenings were never entirely explained.
I belong to the “who cares” category of thinkers about situations like these. As long as I recovered, it doesn’t matter how it happened.
We all know a little bit about how the story as gone since that evening. Please pray or remember those all over the world who can not be with their families this holiday season.

Losing It, my weight that is

I’ve lost some serious weight.
It can’t be seen on the scale.
I don’t know where those extra pounds are, but they’re certainly not in my abs or on my behind.
How do I know this?
My pants are misbehaving. They like to fall off.
My belts are too big, and I’ve been increasing the notches I was for a while now.
Pretty soon, you’re going to be able to see right past me if I turn sideways.
One time, Miss no butt, that’d be me, tried to sit on the ground forgetting I lost what I once had. My estimation of the distance between the ground and myself was wrong.
I ended up trying to sit, but falling on my ass and tumbling onto my back.
This was at soccer practice in front of all the kid’s parents.
I thought the parents were aware of my situation even though I never overtly told them.
I did run around with gloves on my hands so as not to touch the children and infect myself. This was when I was preparing myself for my transplant.
I think that they summed this up to me being a “germaphobe” and that I was a little “quirky,” but still a real fun coach that ran their kids until exhaustion.
I think I handled the situation of informing them wrongly. I thought everyone knew about me until one day I just disappeared, leaving J, my Dad, or the rumors to speculate.
C-town is small. Stories about people like me get around, but leaving my situation to speculation is a bad idea.
That’s how people decide I’m dying when I’m not. This is how rumors get started.
The thing about rumors is not only do they strike fear among those who have known be, but they also get to people who come into my life, such as my son’s teachers. I don’t want the people influencing my child’s life to have a foundation of misinformation regarding his life.
You can probably imagine why this would worry me. At five, X is very receptive to the messages, both spoken and unspoken, he receives from those who carse from him.
He can sense the tension in his teachers that feel sorry for him for having a mother so sick. He knows and will capitalize on this.
If he does not capitalize on this to get want he wants, he will at the very least sense the fear among “grown-ups” about my situation.
If these people are afraid, he must know, he should be very very afraid.
I think these fears need to be halted, on some levels. As for announcing my feelings, I did this to ease the burden and tension in basic communications between acquaintance and I when we would see each other, especially in front of Xander. Though X speaks little, he is very receptive to the verbal cues and emotions of those we speak to.
Knowledge can be power, though everything is only good in moderation. Please understand that when communicating in the presence of my child, or my niece who has verbalized fears about the loss of her aunt, keep the tone light. Keep the conversation upbeat. Ask straight forward questions I can answer with a mater-of-fact response. Unless you’re sooo happy, do not cry.

My Weakness

I think I found my isolation weakness, the one thing on the “no” list that I may not be able to comply with.
I think what it is may surprise some of you.
It’s cleaning.
Yes, cleaning. I can’t take not cleaning myself when I’m healthy enough.
I did start to clean the upstairs for holiday guests. Specifically, Heather & Co., but you never know who else may come along and want to stay. I’m talking about you Steph. I haven’t heard from you in a while and the bedroom for you and Dylan is getting set up.
If my house is a mess, so am I. They directly correlate. If you see clutter, I’m not on my game. I’m just not myself.
I did not dust or vacuum.
I am trying to resist going to the basement to do all the laundry.
I think this is all a quick way to kill myself.
I’ve infected myself like this before, around the same time two years ago. I decided to clear out the basement so X and I could play basketball, soccer, or baseball inside during the winter.
A week later my parotid glands swelled so badly my face was a little unrecognizable. I had some ulcers through out my GI tract. I ignored these until my grandparents showed up for the holidays.
I called my NP in the previous days and convinced her I didn’t need to be seen when I did. After what happened, I promised myself I would never do this again.
My face swelled, along with my abdomen, which bloated so much I looked at least 7 months pregnant. I think I maxed out pain medication options. I was receiving 2mg of morphine every 5 minutes and was still in severe, excruciating pain.
I had nystagmus, an often ominous sign of neurological problems, like an intracranial (brain) bleed. I don’t think this was ever explained.
I sent out “I love you” calls and texts for Christmas, then when I felt better I didn’t remember doing this and couldn’t understand why everybody cried or gasped in delight when I called them relatively healthy.
I hope I never get to the point where I do this again, but just in case, people do need to know I love them despite how this act must scare and sadden them.
I do get sick around Christmas. I have for as long as I can remember. One of my first holiday memories is lying on the floor watching “Scrooged” with my mom, missing the circus with the other kids due to a respiratory infection.
I probably should have mentioned my long term lung issues upfront, but I always chose to ignore them. I deal with them as they come.
Not so easy as a cancer patient.
So I’m going to call some friends and see if they have time to help prep my house, and work to not jeopardize all that I have fought for.

"Disarming"

**This is me, being VERY VERY silly. There is NOTHING gangster about me. You'll get it. Read on. ****

In college, nursing students had to do time in a rehab. I did my rotation on a teen unit in Westchester. It had an array of patients breaching across different cultures with different health issues.
My patient was 17 and had been shot. She was trying to recover.
It is very different caring for this patient when you look 17 yo and she is 17yo than if you are say 30 yo.
We talked like she was my homegirl.
We’d watch the Ludacris video “Get out tha way” and I tried to teach her to dance with her wheelchair.
Luda knows about friends in chairs. I’m betting he has a friend or two that got shot up just like her.
She was vague even with me about how it happened, so I won’t be telling you. I will say, I got her, as in, I understood. I understood the story as something she did being young, stupid, and careless, exerting her freedom.
I was not so far away from that time.
I forget who I worked with in that room as another student, but whoever it was, they were down too.
They had a girl who had her leg extended using some ORIF procedure. I don’t really remember. I do remember I was told to clean the pins holding her leg together, and she screamed at the top of her lungs. She screamed, that is, until we two nursing students, shut the door, and decided to speak to her privately.
I spoke to her like the cool girl would speak to a younger version misbehaving, like she was a friend and she was trippin.’ For her own good, I would not be allowing this.
We never let this secret out to the teachers, that we were chillin,’ watching ludacris videos, dancing in wheelchairs, given fashion, and down home “girl get your head right” advice.
That girl DID clean her own pins after our talk.
I would not, could not, have treated her (and I was treating her as a health care professional) if I had looked, behaved, or spoken differently. Her education was girl to girl. I was her “been there/ know about it” friend.
This is not an accepted educational practice. I hid it because “how dare I” cross “boundaries” with my patients to show them that I like ludacris and thought dancing in a wheel chair was HOT.
With the pins, the door got shut, because that girl needed a good big sister speaking to. That is also understood as an unacceptable education practice.
What I wrote for my teacher was this: Client lives in an apartment in the S. Bronx with her mother, stepfather, and 14 year old Sister. Her parents are divorced. Her father is incarcerated, but has a family in Puerto Rico. X has two half sisters ages 21 and 14 in Puerto Rico. The client’s injury has attributed to depression from impaired mobility and anoerexia arising from fears of “getting fat” from altered mobility. Family visitation is difficult due to distance and lack of transportation, but her mother calls often. X acknowledges no adverse effect of her illness on her family. X has attached to a boy “J” with Lou Gehrig’s disease for a support system. She states that, “he is happier now.” Her favorite object is a small Taz stuffed animal which she brings everywhere. She acknowledges no significant losses while in the hospital and claims her friends often call.
Nursing Diagnosis: a. Ineffective coping related to medical diagnosis as manifested by self mutilation and depression b. Powerlessness (moderate) related to control relinquished to the health care team as manifested by refusal to eat. c. Self-esteem disturbance related to sense of inadequacy as manifested by refusal to eat, self mutilation, and depression. d. Dysfunctional grieving related to unresolved feelings about physical/ functional loss manifested by ineffective coping.
This is what the school wanted so this is what I told them.
What I did was cater what I said or what I did to the person and the situation while maintaining my basic personality. I like to call it “disarming.”
This requires a comfort with oneself I am blessed to possess.
On my first med-surg rotation, a young, female patient, who had waited without eating for 2 days for surgery, ran around the units SCREAMING at EVERYBODY. She threw water ever she could get her hands on. Whoa, it was a serious freak out.
I found her alone, hiding in a corner of the unit where nobody dared to go, and told her who I was and I could help her say what she wanted.
What was happening was a SEVERE communication error, and I could feel for the patient, who also had no functioning thyroid and whose medications were obviously NOT therapeutic yet.
She went back to her room, and when the surgeons came back around, she called for me, but I had all ready disappeared to our meeting, and no “nurse” fit the description of “White.”
Me, being twenty, thought, “She couldn’t really be asking for ME among all those professionals could she?”
Do you get what I’m saying here. It is not always what you say, but how you say it, and who you say it to. Boundaries between caretakers and patients are sometimes barriers to accepting disease processes and coping within everyday life for future quality and enjoyment.

Time to Share More

I think it’s time for me to share a little more.
Maybe you know, or maybe you don’t, but there are MANY MANY others out there in cyber space a lot like me. They are telling their stories in hope somebody will listen.
I certainly do. I analyze the people, like a mass meta analysis of the psyche of cancer patients, specifically, the young technologically savvy generation.
I’m interested in those like me, a rising casualty of the war on cancer. How does a diagnosis at a young age affect coping? The familial and support structure? Health based cooperation? How do you face a possibly fatal disease in the while having of an immortality complex that has not fully recovered from teenage years? What is the psyche in relation to disease as seen in your lat teen years and twenties?
Knowing this, people would be more able to support and encourage healthy lifestyle behaviors in accordance with the specific disease processes.
There has never been a point in history where psychological information of this magnitude has been so readily available and it saddens me deeply that I may not have the health and life span to adequately understand and share how to improve the quality of life among those like me.
A general theme of loss and grieving is clearly seen among all.
Many postings are peppered with announcements about the deaths of friends they have made within the treatment system.
Hospitals are a lot like high school, with different stratospheres based on roles, education, etc.
Having known about the provider’s side for a while, I am finding the patient’s far more interesting. The commonalities within their feelings and coping strategies, which crosses gender, social, and cultural lines, amazes me.
It appears, disease is the great equalizer of mankind.
Once I have time, I will begin posting the addresses so you can access the writing of these others. The writings of the original Baldy, has all ready been added under the heading “My Blog Picks.”
I have never read him per se. I have never fully read any of these patient’s postings.
Somebody else should.
I would not want to compromise my ideas with the influence of others who are so similar. I need to keep my perspective.
However, I invite you all too.
Baldy was my inspiration for the reason I understood exactly what he had set out to do and how he did it. I think of him more like a public martyr than another tragedy sacrificed to disease.
What his blog fails to give him credit for is his social savior faire and genius that made him so popular and respected as a person.

Coping with society in terms of chronic disease

Looking back, something I don’t often do, I remember it took me months to squek out those words, “I have cancer.”
At an age when my life was ahead of me, I was constantly peppered with questions regarding my future children, my family, my goals, my career, my employment status, my educational goals and how I would achieve them.
All required a similar answer: I have cancer. This is not an option for me right now.
I’ve since learned how to mind my own business and never ask these questions.
Nothing would break my heart worse than having to explain all my dreams, my ideas, and the life I had planned were no longer available.
It was especially difficult for a woman like me, who had previously had opportunities showered upon her, and who had never once failed to achieve what I had put my determined mind to.
My determined mind has not sent me into remission. This understanding still is cause for tears, and may always will be. Please, never suggest this is something I could cure with my mind. This is an insult of the worst kind.
The faces of those whose questions I answered honestly, when able, where all the same: shock, then awe, and a flood of questions in their minds.
“But you look so GOOD,” they’d say, as if you could tell just by looking that my blood formed tumors in my lymphatic system.
On one occasion, I was shopping for a friend who was pregnant, and for lotions to help with my radiation. The perky sales girl was sooo happy I was having a baby.
No, my friend is having a child. I AM having radiation.
“Oh, I’m so sorry.” After a few minutes of awkwardness, I was given some fabulous gifts to make my life easier.
This is a common problem among chronic disease sufferers of my age.
When this friend had her baby, she went home and suffered with double vision and the loss of feeling on one side.
She has MS, and must cope with the reality of raising a child in the face of her disability.
It is possible to raise a child while experiencing functional loss, just as it is possibly to raise a child while undergoing treatment for cancer.
It’s all in the quality of time and experience with the child, not the quantity. Quantity is not something we as ill young women have the luxury taking for granted.
Enjoy the time you have.

***The Kevin Lyttle song, an old skool college favorite, is for my girls like this, and some homeboys, who have been with me and understood this mindset for years***

Lost in Translation

When I moved to NY, I automatically hooked up with the “rude girls.”
You know the type: the loud, wild, rowdy college girls that like to celebrate their freedom Thurs. through Sunday.
Our first trip out was to Carib, a nightclub on North. St.
Being from NH, a country girl who was a little naïve, I didn’t think “Carib” meant anything.
It does. It’s a Caribbean club. Not that knowing would have stopped me, I immediately fell in love with the dance styles and the music. My CNR girls were a lot of fun.
Anyway, the DJ’s were always playing this song. I really liked the beat, but I had no idea what it was saying.
I would sing it and eventually I asked who it was by and where it came from. Thank goodness my friend’s intervened before I ran singing THAT around.
The title was “Chi Chi Mon,” and apparently, this is a gay man in Patwa.
I didn’t even know what Patwa was, but thank you ladies, I know now this is the dialect of English in Jamaica.
I was apparently spewing some hate that would never ever come out of my mouth otherwise.
This is how I started learning languages, through music. Then I had a lot of Jamaican friends. My BF sophomore year was Kisa (she liked to say it “Que ca?” as in “what’s that?” in french and creole in the loud bars to the boys).
She was from Jamaica Caribbean & Queens. We watched the same shows at the same time. We had the same classes. We liked the same food from the same places (Kennedy Chicken & Golden Crust anyone?) After a while, we discovered we wore the same underwear, just like us, in different colors.
We had the same attraction to the same type of man on the exterior. Ethnicity had nothing to do with it. I was in the process of “Dating the Rainbow,” which included picking a man to see I was interested in of every ethnic subgroup (only the clear basics: white, black, asian, Indian (I know, also Asian, but you get it.)
I learned a couple languages from my friends who translated the hate that was coming out of other people’s mouths about us or me.
The FCC apparently doesn’t speak anything I do. Some hospital’s do, but their educational materials certainly don’t.
If anyone has heard “I’m so Paid” by Akon and isn’t scared of what he is saying, you don’t know what he means. If you see the video, and still don’t get it, uh-oh.
Let me translate English, I call what he’s saying “Ameribonics.”
I didn’t realize until earlier this year that people didn’t understand this as a language and even what I was saying.
The song goes: “#1 hustler getting money why you want to count my money. I’m a hustler you know me down what you got you see. I’m the boss it only takes on call and try to hit you up and dump you off and that’s all. Guess what, I won’t be taking that call, Homey I got X what you think I’m paying them for? AH ha ain’t that funny, guerilla’s they want war but ain’t got money. Cause I see them all talk till they start gunning.. . . fastest thing running. . . I be getting’ it upfront. My little brother boo got the vision, baby.”
It gets a little fast in the …. Areas.
Anyway, he’s announcing he hustles his rap money back to Africa to fund guerilla warfare. As for “#1 hustler getting money,” his video shows him on a 25+ million dollar yacht selling diamonds (as in blood diamonds) to an uppity white woman.
“Why you wanna count my money” means “don’t you trust me?”
You know me down, as in, I can keep a secret.
Just in case the next portion isn’t clear, he won’t be getting his hands dirty. He is the hierarchy of the trade. He has fall guys and they have falls guys. He “mentions” someone is a problem to his wing men, and then that person goes away.
You feel me? This structure exists in many cultures. Akon’s the alpha male.
Then he goes on to mention it happens beyond the streets, which is generally where it ends in rap, but he commands international trade of goods, probably with contacts out of Senegal where he is from. Of course, he is much more of a hero here than you could imagine, making it big in America and all. He rules more than just Senegal.
My friend’s sister just got home from Senegal. I should hit her up for her stories. She’s an OB/GYN. I don’t know if she traveled with an agency, as in Doctors With Out Borders. With beauty and talent like hers, she may have been better off on her own to appear more native.
Scary, scary, scary. Moral of the story, sometimes people hear but don’t listen and often people see but don’t notice. This is a huge mistake people make. Open your eyes, and hopefully, you will see what you have been missing.

Give a Girl a Break

***Happiness is not having what you want, but wanting what you have****
In one of my previous postings, I referred to a “benefactor” who would often do little gestures to make me smile.
He was a little “unimpressed” with my choice of the word “benefactor,” though an article in “Dartmouth Alumni Magazine” describes him in a similar manner using the same word.
He felt the choice of words insinuated an alterior motive for his giving, while he genuinely gives as an investment in the potential in a person. He gives what others cannot give themselves.
He’s done this for years previously. Luckily, this time, the lucky recipient just happens to be me.
He gives and asks little to nothing in return. In my case, what he was to receive in return was my survival.
In the years since I’ve known him, he’s upped the ante a little bit. I am now required to “pay it forward.” I’m required to give to someone something they cannot give to themselves.
My son met him sitting on a bench outside the cancer unit when I was an inpatient at Dartmouth in 2006.
X had a speech delay, and at three, had never just struck up a conversation with anybody, certainly not a stranger, but he picked Frank right up.
Frank was sitting on the bench with his father’s dog, a German Shepard.
This was a great icebreaker for X, who loves to talk about “Nika” our dog.
When X heard Frank’s dad was in the hospital, he immediately launched into a story about how his mom “lived” in the hospital too!
How could that NOT get somebody’s attention?
Frank started coming by with presents for X and I. He referred to himself as the “old gray ghost,” and rarely came in to see me.
Until one day, I requested, or demanded, to see him. I wanted to know who this guy was.
He knew little about me. He certainly did not pick me for my good looks. I was bald and had gained 30 lbs in fluid overload on the day I met him.
He did like my “sassy attitude” and my “wit and charm.” He was also impressed by my smile, which was all I really had left of my looks by that point.
I was impressed by his honesty. Even then, I was rarely put in my place. He “kept it real” with me.
Another “project” of his stated, “through his words I’ve come to realize that he invested his money in me knowing he will get a return on his investment. This may not come in the form of cash but will happen through my personal development and my helping others unconditionally in my own life.”
He knows how to pick diamonds in the rough. This woman is now pursuing her PhD in economics, finance and education reform. She started as an undergraduate math major at Dartmouth.
I’ve come to know him as my “give a girl a break guy.” I was impressed with his ability to enter my life despite my family’s misgivings. He did have to provide references to my mom to validate his intentions.
Being a Keene State grad got him an automatic in with my dad.
Now, we’ve been friends for years. I’ve never met anyone else like him. That’s what drew me to him in the first place. I enjoy people’s eccentricities. I’m even okay with showing mine. We’re a rare breed.
He has inspired me, along with many others, to share my experience. I thought I could provide information and a perspective people may not get elsewhere.
He convinced me I still had talents to offer, not despite my situation, but because of my situation.
My idea to give what I know for free has always been mine. Education and information should not be exclusively for the wealthy. It should be available to all. Everyone deserves inspiration. He just reminded me that I still had something I could give, myself.
Frank’s investment in me validated my feelings, my ideas, and my intelligence. He encouraged me to speak. He taught me about “person-to-person giving,” a concept I love.
No middle man, no intermediaries means no corporate overhead, no one dipping their sticky fingers in the charity pot. I love it.
I have a charity idea based on this concept. I’m not ready to present it yet, but someday I will.
I took a couple swipes at “paying it forward” before my blog idea. I attached myself to some young single mothers, women I could relate to, until, unfortunately, I became too sick to help.
His concept and manner of giving has been used as a foundation for my works and ideas. I am still lucky enough to have compelled his interest. You can all thank him, a little bit, if you enjoy me.

***Please thank Frank for letting me tell his "secret." He started his own "Hillary Update" list years ago, which filled my life with many friends who support me***

This Isolation Thing

This isolation thing has been good for me.
I think just about anyone has the ability to flip the switch and find the positive in something that, to an outsider, may look unbearable.
This is the life I got and I’m going to live it.
There are all sorts of these sayings. “Play the cards you’re dealt,” etc., etc., etc.
Anyway, J and I cut out our budget breaker, our only true vice, eating out.
We don’t really drink. We definitely don’t smoke. As far as shopping, we don’t do it for ourselves so often.
X requires a lot of “updating” since he grows like a monster.
I would buy from Kmart, J won’t allow it. I do buy second hand. Sssshhhh. Or I buy cheap pants and designer shirts on clearance. Who really notices the pants? Pants are ALWAYS available second hand.
As for shoes, my child will rip them apart in a week, no matter what brand. I buy, I pray they’ll last a week under his reign.
As for groceries, I always shopped generic, quickly, with a list.
I’d purposely not get a cart. I’d carrying whatever I could or I would get a basket.
You’d be surprised how much this cuts down on impulse buys.
I do really think I should block online shopping sites so I don’t have the ability to buy at three am on a sleepless night.
No more of that. Yes, a deal is a deal, but it is still spending money.
This is how I bridge the decorating gap with houses. I try to find the common ground between couples. I know how to stick to a budget, and make beautiful things.
The men are happy they get to deal with the man stuff with my father, and I can deal with a woman who wants to make the interior beautiful.
I like to make practical, eco-friendly decisions based on a set amount of money or BUDGET.
I carry my calculator from store to store. I take notes. I find the best sales person and get catered to.
If I don’t, you won’t be getting my business.
I LOVE my calculator. I feel like such a geek admitting this, but there are just so many options I can use with it.
As far as my notes, I am eyeing a LIVE SCRIBE for Christmas. This is a pen that takes your written notes and then transfers them to your computer and puts them into type for you!! I didn’t know this existed, but it screams “Hill needs to have it.”
Maybe, I’ll get back to eco-friendly design when I have the energy… or maybe I’ll find something else. I do redesign everywhere I go to improve several different aspects.
No space, no problem. I started doing this in NYC it’s all about repurposing the same place or object.
As far as eating out, DiGorno’s is just as good as take out. I love the supreme version. It’s also cheaper and doesn’t steal my gas.
I have breadsticks to stick in the oven. I also have mozzarella sticks. I have everything I would order out.
J and X have chicken tenders, fries, and onion rings. We do own a “fry-a-later.”
I know it’s unhealthy, but the food is sooooo good.
So if we paid $20 a week on pizza, we know pay $6 for pizza and $5 on three weeks worth of bread sticks. That’s about 1.67 a week.
We’ve saved $13.33 a week.
One hundred days of isolation = 14.29 weeks or a savings of $190.42.
Whoa. That adds up.
You feel me people? Isolation is okay, but it is good for the wallet.

Whoa

Being Me Again

***I'm having trouble postin vieo #1 for my next posting. I'll get it later*****
I’m starting to feel like myself again.
It’s a big breath of fresh air.
I feel like I can let go a big sigh of relief now.
I’m on the upswing. I feel good.
I’m EATING!!
My appetite is usually one of the last bits to return.
My energy levels will require longer, much longer, and possibly may never recover fully.
Oh well, at least I was a little hyperactive to start with.
The immune system is not considered fully transplanted until 100 days. At that point it can be said it’s been successfully transplanted. After this day, I’m grafted.
Except, one women I did know did have her transplant fail after 120 days.
I try not to think about this exception to the rule, but how can I not. It’s especially hard since she was the first person I knew who actively fought cancer.
She looked a lot like me.
I don’t want to think about it.
Just because it is grafter does not mean it is MATURE. I will still have to be cautious. The cautious guidelines are a little gray. This phase was not included in the 10 lb three ring binder (believe it or not).
I’m glad this windfall of health and energy happened before the holidays. I think I’m in for a lot of fun, and as of Dec. 18th, today, I have exactly another month to hold out at home.
I spoke with the man in charge today (that’d be Dr. Alyea). He was not so keen on my idea about taping him. He had an explanation AGAIN that I didn’t like but respected and listened to.
I know you hid on me Melissa. I promise I would never hold you down and force you to share your opinions. No need to fear, and your hair does look great. The holidays agree with you.
Anyway, apparently 100 days is NOT an exact date where I can return to ALL my normal activities.
The four friends and their families I was going to pile into my house for broom hockey, NOT OKAY.
I need to transition.
NYC the second weekend of Feb? NOT EVEN IF I AM STAYING AT THE HYATT GRAND.
I need to be cautious for 6 months after the 100 days!!!
How could this be sprung on me? Obviously, I have suffered too much for too long to do something stupid and jeopardize my health. I literally cannot afford much more treatment.
I tried to reframe my questions to get the response I wanted, but as soon as “Soooo…..” came out of my mouth, J intervened.
He told Alyea the answer was “no” and I was about to reconstruct a similar, but essentially the same, question to get him to change his answer.
I was not too happy J was blowing up my spot and ratting out my communication secrets. J also informed me he heard LOUD and CLEAR Alyea said 6 months.
Alyea is a very smart man, but I don’t think he speaks “woman” and I have never met anyone who speaks “Hillary” specifically. There is no degree in THAT. My man did not have to sell me out to the boy’s team.
Does this mean I won’t be coaching basketball?
Will I be canceling those vacations to The Zoo and the beach I had planned out in my head? The Zoo may be able to wait until June, but I need some warmth, but not sun, that’s on the “No List” FOREVER.
Just because I’m not in NH doesn’t mean I’m surrounded with people, so S. Carolina in March or April should be okay?
Maybe, DC in April with X is fine too? The Smithsonian can’t be that crowded.
I really like to “escape” and my future plans did include “socializing” in Boston, New York, Philly, DC, etc.,etc., and down the East coast to stay with friends.
Sometimes, I know the answer, but I just need someone with a lot of education and some sort of power over my life to tell me “NO.” This person cannot be family.
I’m not so big on this “no” word. I have been hearing it a lot lately.
I take it like the women I am, but deep inside, I want to behave like I did when I was a little girl with my father, or his friends, tried to deny me something. I’d start looking at them, confused, then pout and rephrase the question.
They couldn’t REALLY be saying “no” could they? I think I may have found a breed that CAN look me in the face and not let me do what I want.
I’m fascinated.
I would not do anything to jeopardize my health, but I would REALLY REALLY like to get away from my house somehow. I’m sure my sister’s is fine.
As for a HEALTH UPDATE, I am looking as good as I feel. I am feeling like I am getting back to my fabulous self. I’m feeling the upswing, and I have PERFECT labs to back me. As an example, I woke up and put together an OUTFIT, that was CLEAN. I looked good and I felt good, too many people don’t know how priceless this is. Happy holidays to me.

Not That Crazy

The Knicks Picture. . .

Just so there is no misunderstanding, the Knicks were playing THE CELTICS when we went to see them in NEW YORK.

If you don't know about my loyalty to the celtics, you can read about how I reacted when I was taken away from their celebration parade this spring. I forget the posting, but it's somewhere around "I want out of my life."

Really, J and I discussed this. Most people celebrate "The Holiday Season." We are celebrating basketball season.

This is really the best thing about winter.

My last, most intense freak-out, came when my neice's coach called to tell me her first practice was on the 18th, the day J and I were going to Dana Farber.

No, not the PET scan or colo suggestion, not the headaches, the cough, those are not what devastate me, but how am I gonna get my baby girl to practice.

I couldn't handle the idea that she might miss her first practice and how were we supposed to get her the shoes, shorts, etc. that she needs.

We'd have to call her mother.

Luckily, my mom stepped up.

My neice has been around for J and I's entire relationship. I do feel a little guilty to have invited children into our lives and then pawning them off on nana.

But I made this decision nine years ago, too late to stop now.

Lex has gotten her gear. I did get them with her, because I like making her look like the baller I KNOW she is.

She opted NOT to play with the boys. I respect this decision. J did not understand and made a remark about how she'll have to work harder to improve herself among girls.

I almost smacked him for his sexism, until I remembered this was an issue we had agreed on.

J will help coach, and I will too when I'm "released."

We're also coaching X on Saturdays. I'm so excited the kids are finally playing age. I was running out of hobbies.

Learning Nursing

One of my first days at work in NH I had a patient with kidney problems.
She was pretty basic. I was comfortable.
Her BP was 55/30.
Being from the Bronx ER, I thought this was fine.
That is, until I told the surgeon and my preceptor, and they freaked out.
My exact response to their BP concerns was, “What’s wrong? She’s got some.”
“What did they teach you in NY?” my preceptor said shocked and started to take over.
Ooopps. I was still in “wait until she codes” mode. Apparently, that’s not how NH functions. I wasn’t told this in orientation.
The surgeon, one of my favorites, came out and started asking me how to treat her metabolic acidosis. I’m happy I was smart enough to know how to say “Bicarb” and read the labs and ABG.
I thought I’d be dubbed an idiot forever. I was only twenty-one, so I think I got a little pass.
Except, fortunately or unfortunately, the boys saw it as WHOA, she needs immediate cultural retraining.
The surgeon, after we fixed the patient, asked me “What is a double blind study?”
“Great (sarcasm), he thinks I’m a complete idiot who doesn’t know anything.” I thought.
“It’s two surgeons looking at an EKG.” HAHAHA.
Thank goodness I got one with a sense of humor.
After that day, my preceptor and the surgeon thought it was funny to play games with me. I was getting a “special” training.
I was told med-surg needed a patient IMMEDIATELY and to MOVE, MOVE, MOVE.
I did, one minute and that patient was on their way to their new room. Until the supervisor caught me and informed me that I’d have to give REPORT to the nurse before I stuck the patient in the room.
What?! The patient is fine. She’s in a coma.
Not so nice boys.
Then, my preceptor started telling all the doctors I got my license with a fake ID and that I was really sixteen.
Funny concept, and I can appreciate the jokes and where they’re coming from, I grew up with men like this, but when a doctor stopped me during my recommendations and asked, “How old are you? HOW OLD ARE YOU?! I need to know before I can take you seriously.” I decided his games were too much.
I was twenty-two and really considered lying about my age to make myself older.
He would encourage me to sneak around and steal supplies. I thought this was normal. I could do my “stealth Hill” thing. I thought I was small and inconspicuous enough to get what we wanted.
Not in NH, especially since I did look about 16 years old and was breaking into the goods, one nurse thought I was “one of those” a young drug seekers that is OKAY trying to break into places like the code cart.
“Really, I work in the ICU. I just wanted the box and cable to monitor a patient’s temperature” did not really go over. I thought I was going to be dragged back to my unit by the ear.
It only took me a couple weeks to smarten up.
My preceptor is still where I left him. Unfortunately, the humorous surgeon was diagnosed with ALS (Lou Gehrig’s Disease) and died in 2002 or 2003. I think a wing at VRH is now dedicated to him. I’m glad I remember him how I do.