Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, October 31, 2008

I'M IN LOVE

I’m in love. . . . . with my new necklace from Tiffany’s.
I didn’t really believe pretty things could make me this happy.
I’ve never really been a shallow girl, but damn, this is really nice.
I think every woman needs a necklace from Tiffany’s, in the blue box with white ribbon and sealed in the suede satchel.
I’ve bought Tiffany’s before, it came with the satchel, but I don’t think my weakness for designer goods that magically appear in my pocket from an alley on Canal really count.
I keep telling myself that these things are WRONG, and I am going to stop immediately. I’m weak, and apparently, I’m okay with walking a moral line.
It is not illegal to buy counterfeit goods. It is illegal to sell them. Just in case anybody was interested.
I first saw this on the neck of a radiologist while I was getting an ultrasound.
Yes, this is what patients stare at while being poked and prodded. She gets to look at the inner workings of my pelvis, and I stare at her jewelry, analyze her face and those of her doclings. I stare at the ceilng or the art on the wall. I analyze the layout of the room and reorganize it to make movement more efficient. Most of the time I sleep.
It depends on my mood.
It was love at first site. It’s a silver Elsa Peretti L that looks like a fancy cancer ribbon. She felt as strongly about how fabulous her necklace was as I did.
Now, I feel more like a survivor and less like a patient. I now have “survivor” over my tattoos distracting from my scars. My line is gone.
While Im gushing about my new fashion accessory, I'm wondering where my new cancer girl is. She's done with her transplant. She works in fashion in Boston and has a beautiful accent. She looks like me" the hair, the glasses, & the outfit." Where are you? I'm feeling a little more social. I think I may be be giving her a call.
To take the day up a notch and make it even better, I got to see X at his first Halloween school parade today! He was a ninja turtle.
I’ve rested most the day, so I’ll be able to go out with him tonight. I’ll sit in the car and watch the kids go by.
I’m hoping he’s still young enough that we can drag him to our friends houses for pictures, but I think he’s at the point where he’s going to run around the neighborhood like a maniac and try to break into the chocolate immediately.
I’m happy tomorrow is a Saturday.
I’m actually getting into the Halloween mood. I generally stay away from scary movies. They scare me a little too much. The people who create them, specifically, scare me. It’s difficult to take your mind to a place as dark and specific as they go and come back.
I also think themes in society present themselves first in horror movies. Have you ever heard of The Eye or Awake? I haven’t seen them, but I didn’t even like the previews.
I think we may go rent something scary on later.
One of my biggest fears is serial killers. This is probably a common fear among people, otherwise my lifelong fears (okay since 12) have been, hold your breath, 1. HIV/AIDs 2. Blood Cancers, specifically leukemia, and C. MDS (myelodysplastic syndrome), which occurs as a side effect of blood cancer treatment.
The logic behind these fears is that these diseases kill young people for no reason, and if #2 doesn’t get you the first time around, #3 will get you in 20 years.
If you think I’m lying, you can call my sister. I was a weird little kid. While other students were drawing monsters in their closets, I was drawing cells and double helixes.
So, back to my gorgeous necklace. Holler to the man who thought I deserved a little cheering up. It worked.
Life is good.
I’ve been having some minor problems, with aches and pains and low grade fevers with chills and sweats.
I know you’re sitting there thinking, “oh no, did she really just say that. FEVERS!”
Yes, I did. They are low grade with no known cause. Nobody is too worried. I have discussed it with my Doctor. It has not crossed the 100.5 line that suddenly makes it a possible dangerous bacterial infection.
I’m hoping it doesn’t lay me up in the hospital for a couple days.
I have the nagging thought in the back of my head that maybe it’s the “C word.”
I’m not talking about the dirty four letter one, I’m talking about the C word that would make all my previous suffering completely worthless.
This is normal suffering patient paranoia. I DO NOT HAVE CANCER.
I wonder what would happen if I did?
Let’s play the what if game?
Patients like me can have three transplants. There are endless possibilities for trial drugs.
In my first trial, I sat next to an 83 year old man that had been in clinical trials for 6 years.
Six years is a long time. I wished he would come to terms with whatever guilt he was carrying, and allow himself to die. I have a great sadness for this man.
I can’t say how far I would take searching for a cure. My guess is until I up an die one day from a side effect that cannot be treated in time.
I vote septicemia.
Either way, I will not be getting a PET scan for my paranoia. I’ll live in my personal horror movie, thank you.
My insurance company, Bless their hearts, have outright denied my last scan.
I haven’t tallied the denials, but every PET scan I have ever received has been approved and denied. Eventually, as in probably after my next scan three months from my transplant date or Jan. 9, these denials would have cost me more than the remaining total on my mortgage. We’re talking $120,000-140,000.
No big deal. No stress at all.
Happy Halloween people. Go enjoy the evening. Pray for me tomorrow. St. Pergotamine is the patron Saint of Cancer if anybody was wondering who to it up on my behalf.

X and the Rules

video

The X Factor

Happy Halloween everybody. I hope all you women are prepared to treck around town with your children tonight. I hope you’ve baked your cupcakes and bought your candy.
Lucky me, I did not even have to pull the “Cancer Card” to get out of contributing to the kindergarten party. I rank this under “priceless.”
Even if I did, you all know if I was too busy, I’d buy them from the bakery and stick them in Tupperware.
The cancer card is a a wonderful thing. It gets me out of responsibilities and commitments basically when ever I want. I can call up at the last minute saying “I’m too tired” when I really mean I feel kind crappy and cranky and I don’t even want to hang out with myself.
It’s okay.
I don’t abuse my cards, but I enjoy the points and perks.
I do not get to pull this card with X. He is unique. He is a special co-survivor. Let’s call him “the X factor.”
X knows I have cancer, but doesn’t quite grasp the idea of this disease.
When I was diagnosed, he was just barely three. We told him bald moms were normal and thought I’d be cured in 6 months.
Now, he’s five and the other kids are telling him a bald mom is weird.
We also used to tell him I wouldn’t die. He now knows this isn’t a guarantee and we’ve discussed this. He can ask questions whenever he is interested.
He calls my wheelchair a “mommy stroller” and yells at me for hogging it.
“You can’t stay in there forever,” he’ll scream. In his mind, I’m just a lazy stroller hog.
He has extreme separation anxiety. I’ve tried to remedy this by taking care of him with a strict morning routine that, no matter how terrible I feel, I try to follow.
I drive him to school. I drop him off at the door.
When Jenn picks him up, X has the option of coming directly home or hanging out with his friends. He is so excited he gets to make “choices.” He feels independent and in control.
He understands the anatomy and explained to me how a hickman line was placed yesterday. He can do a full physical assessment with a stethoscope. He’ll either hate science or love it when he grows up. I don’t care as long as he is happy.
He also guards the house and the rules. Don’t you dare try to enter our home without washing your hands properly and wearing a mask. He’ll start charging at you from the living room and push you right into the bathroom.
You will be coming no where near me unless you wash your hands with soap and water while singing the ABCs. Then you need to dry them and put on purrell. After that, get your gloves and mask on.
Only then are you allowed to come near his mother.
He’s started teaching this process to his friends, who sometimes cry when they come to our house. They know X’s mom is sick, but they don’t understand all the weird rules. It makes them cry.
It doesn’t bother me. It doesn’t even bother X. He just goes right on teaching how they can enter the house to play.
The mom’s all say they’re so sorry and they’ve tried to explain to them the best they could about my sickness.
I think the reaction is great. I only have friends that are wonderful parents. I know they’ve done their best to thoroughly explain our situation. I tell them not to worry about it.
Crying and fear is a normal response in a five year old. Hell, fear is a normal response in adults.
I want these children and adults to get comfortable with me as a person and not simply as a disease. I’m all for shocked reactions and explanations since I know they’ll be able to reference this experience in the future and use it to react in a socially acceptable manner with someone who may not be as strong as me.
That’s why X is a rock star. There is no doubt in this. We all know it. We all see it, but today, he’s just going to be a ninja turtle.

Thursday, October 30, 2008

Discharge Toys

video

Hooray for Today


Weight-117Lbs (53 kg or 1 lb less than Heather, my base weight), Daily Meds-24, Pain meds-30 mg, Temp- 100.1, 98.9 & 99.6 liquid, 1 cp. Coffee, 1 cup of tea, 1 glass vitamin H2O (ok, I failed drinking today), Food- 2 honey buns (Again, we all have weaknesses), 2 pieces wheat toast, 2 choc. Chip cookies, one turkey, cheese and mustard sandwich on a bulkie roll, and spaghetti with meat sauce( I had a busy day and didn’t pack all that much food).

I‘m sitting at Dana Farber, waiting, again.
I’ve decided after my experience on Monday that I would take a preemptive strike against sitting among the sick masses who cough and hack and get a pager.
I required two pagers today, one for my labs to be drawn and one for the doctor. These pagers set me free from waiting in the overpopulated waiting room and sent me to the more informative library.
Aaaawwwww. So much more peaceful.
It also helps me maintain my drive to be isolated. It’s a little hard deciding I’m not going to the mall on the way home to buy a nice new pair of shoes, or to the basically empty bookstore across the street, when I’m being forced to sit among hundreds of sick people.
Do you get what I’m saying? It is a little hypocritical.
DF did send someone with a great contraption to clear the air (See case and point in the picture). I was really amused that the portable gadget existed so all the cancer patients don’t really have to breathe near each other.
Good news is, I’m getting my line out today!! Yes, that terrible appendage that tries to sneak and hide in my armpit every morning is gone. I don’t have to live in fear of septicemia or hold a grudge against the dumb dressing change nurse. I won’t have to take 10 minutes covering it with a gallon freezer bag then taping it to my chest before my shower. HOORAY, today is a good day.
I did mean to tell everybody the best method of protecting your line. I recommend big tegaderms with gauze pads, tissues, whatever over the dressing to protect it from getting wet. If you don’t have the hook-up for tegaderms, I seal the line in a plastic bag (it’s really not a big deal to keep your line dry), then I fold the bag over the dressing and tape around the outside of the bag with silk tape. DO NOT TAPE THE DRESSING.
Do not use stick and seal. It really doesn’t work.
I did have a little bit of a rough night. I’d spiked temperatures sporadically all day, but never over 100.2.
If the phone would ring across my bed I would look at it and try to decide if I had the energy to leap across the king size bed for whoever was on the other line. Generally, I didn’t and let the answering machine pick up.
X woke up with a croup cough at 2:45 am. I had to get up and sit with him in the shower, get him back in his PJs, and give him some cold medicine with mom’s special TLC.
I think the Mom TLC is really what does it.
I’ve just finished seeing my hot-shot Dr. Alyea. This is how he was first described to me when I was being referred. I remember pouting inside and thinking, “But I don’t want some hot shot doctor. I want a down home boy who will remember who I am.”
But I kept my mouth quiet. I’m told he’s very good.
He is, maybe the best. He’s grown on me and I genuinely like him, Melissa (NP) and Pat (RN transplant coordinator). I think I’m in good hands. At first, I thought A was a little cocky and cavalier, but I know the success of his patients is personal. He will obsess about any problem and find the best answer. I like that. I’ll take it. He is a good guy.
Any patient of his is being taken care of.
His professional opinion, with all his education backing it, is that “I look great.” My labs, again, are fabulous.
No, I didn’t get copies, but everything is normal except the white and red counts.
I’m feeling okay today. He ordered me a chest X-ray because of my exposure to my son.
Then I went to radiology at Brigham & Woman’s to get my line pulled. I wish I’d brought my camera to show you the simplicity of the procedure. I was given the “PA of the year” and Patrick got to be my nurse again (lucky #3, holler).
As far as having a line pulled, it doesn’t hurt. Take a deep breath, close your eyes, distract yourself. If you ask for local anesthesia, it will probably hurt more. It stings.
As far as the staff at the Shapiro Family Center and the Radiology Dept., they remembered me from my first trip when I left in tears because of my shingles.
They remembered my from my second trip when I was going in for my transplant.
And they remembered me and celebrated the end of my chemo with the removal of my line! Where are you going to find treatment like this? I like everybody I’ve ever met there.
I nominate the radiology dept. at B&W for Rock Star Staff of the Year. They’ll win, since I just made this award up.
They should post this on their wall to remember that their patients love them.
Bring it to your administrators people and ask for raises.
The three hour trip home was uneventful. X bought me Pictionary Man yesterday, which I’ve been wanting, and we were able to play it after dinner.
This is my life today.
One last thing everybody, My hair is on my way out it can take about 21 days to start to lose your hair. I had estimated 24. Please consider speaking to your children about this. I’m sure you have told them X’s mom is sick. Becoming a bald woman is a very concrete sign for a child that something is very wrong. This symptom correlates with the 4-6 year old age groups method and structure of thinking. Please talk to them in advance and answer questions.
I do not mind kids pointing, staring, and asking loud questions. Do not ignore the subject and get embarrassed. Speak with them or bring them to me. The next bald person they see could be a little girl with leukemia in their second grade class. I’d much rather their questions fall on me.

CHANGE THE WORLD

The world is here, and whether you decide to meet it or not, it’s going to slap you in the face. I’ve decided to step up and meet the world, but what is the world expecting of me?
Respect? That’s what I give, but really, the worlds’ expectations are not too high. I’m a cancer patient. I’m incredibly ill, but I’m looking around the world. I am seeing it in a different way.
I don’t like what I’m seeing. I’d like to flip the world on its ass. I want to pay it forward.
I’m reviewing possibilities like a child, thinking the realm of possibility is endless for me. I’m not limited by my previous experiences. I can not let my talents atrophy.
What have you done to change the world? We’ve all done something. Open your eyes and embrace the minute changes you have made in the lives of others.
I’d like to require everybody who I’ve welcomed into my life, who I am experiencing the world with right now, that means all you readers, to pay it forward.
Remember the butterfly effect, one small action can change the course of the world for all time, every small politeness is a change in the world.
Greatness is in the eyes of the recipient, there is no greater need than for small good deeds. Remember, you can change the world and pay your gifts forward from where you are right now.

Wednesday, October 29, 2008

Before, Dyeing, Dyed




Before, Dyeing, & Dyed

Playtime


Weight-? Lbs (Who knows?), Daily Meds-24, Pain meds-35 mg, Temp- 99.9, 100.2 & 99.5 liquid, 1 cp. Coffee, 4 cps of tea, 3 glasses H2O (or a lot, more than 2 lt), Food- 5 honey buns (I can’t resist), 2 pieces wheat toast, 1 bowl cheerios with 2% milk, 2 choc. Chip cookies, one turkey, cheese and mustard sandwich on a bulkie roll, one package frozen broccoli & cheese (thanks green giant), 12 oz roast beef with mushrooms, green beans & tater tots (You go for it and add up the calories).

I decided I needed some good solid girl time. Isolating myself and watching old seasons of Sex & The City were just not working for me.
Maybe I’m prude in my old age, but Carry kept (take a deep breath). . .smoking. You could tell it was the 90’s.
I had to shut it off when the girl porn scenes came on because I was embarrassed to watch it in front of my Aunt, and so we’re all clear, Sex & The City is girl porn.
I don’t understand why so many men railed against our female nights when the film came out. Many of you treated us like we were running off and cheating with Carrie, Samantha, Miranda & Charlotte. Maybe, it was the after parties, and the ideas we might be getting?
So I made some phone calls, and in cancerageous style, two of my closest girls came by so I could see what my hair looked like red, and I could play dress up and pretend I was a model before I go bald.
I was given permission by my team for my “regular friends” (as in the ones I see daily) to come by without total restrictions. Taking off their shoes and jackets and washing their hands is still required.
I don’t think my team knew how many regular friends I had. I’ve been keeping them at arm’s length, but I’ve had enough.
So Jenn, Xander’s perfect fill-in mom who takes in him to school, gets him dressed, and feeds him breakfast in the morning when I’m away, then picks him up from school and keeps him happy with Colin (5), Ethan (3) & Jerry (?, her husband) came by with Colin.
Then Alissa came by, the alpha mom, who also happens to be my cousin and creates business ideas daily as a hobby (just like me, it’s in the genes to make money), but she left Logan (4), Xander’s “brother” at home.
Xander is voting for Alissa for President, even though I’ve tried for months to make him say “Obama is my homeboy.”
I feel lucky and completely unworthy to have these “rockstar” friends. Sometimes, I’m really amazed they keep me around and help take care of my family.
I’ve been sick a long time, I don’t have much to offer in the way of a relationship. I’m generally suspicious of people who want to get close to me. I wonder if they’re masochists who are fascinated by my pain and suffering or if they enjoy the drama.
I don’t understand why anybody would get too close to me. I can’t bring much but pain. I have nothing to offer. I’m not the independent girl I used to be. I generally hit up the elderly or other cancer patients as friends.
Keep your space people, even if I do turn on my charming “addictive” personality and force you into enjoying my company.
That’s what I did today. I decided to behave like a little girl and dye my hair bright red before I lost it all. I’ve never dyed my hair in my life. I’m happy with how I’m made.
Lissa walked me through the process. You can enjoy my experiences with me through the pictures. I’ll be losing my hair within the next week. I’m shedding. My hair is thinning. My scalp tingles, but it doesn’t hurt yet. Yes, the process of going bald was not pain free to me.
Baldie’s going bald.
Jenn went home while Colin and Xander occupied themselves.
My hair is now as red as it will get with over-the-counter dye. It’s hard to color black hair.
Then Lissa brought her fun gadget of a camera and let me play with it. I like my toys, but obviously, I’m on a tight budget. I’m a frugal hack. Pretty soon technology will outpace our capabilities as human beings anyway, by then, hopefully, I’ll have cash to play with.
Until then, google has apparently recognized my talents, and I’m considering sharing. I probably won’t, since this may prove I am NOT disabled.
McCain wants to cut me off from Medicare & SSI/SSDI anyway with his plans for $882 billion in cuts. Yes, he wants to leave me high and dry with a taxable insurance plan. Since he’s so generous, he’ll give me $5000 in rebates.
Five-thousand-dollars, maybe he should just come by my house and steal all the food out of my fridge and slap me across the face. That barely covers my deductables and will not cover 10% of my copays.
Pretty shifty from a guy we call “McSame,” who can’t use a computer, and thinks a blackberry is just a fruit.
I voted for McCain 8 years ago. He was good then, he’s old now. What happened to “What the fuck, vote for Huck?” republicans?
Anyway, so with my new hairstyle, we played dress up with my clothes collecting dust in my closet. I won’t be running around showing them off anytime soon.
I won’t be playing “Annabelle,” anymore, the cute, pixie-like, married, 30 year old who jumps into the middle of the dance floor to shake her ass and collects free drinks despite the fact her relationship is “non-negotiable.”
I like having people still try, and I mean people, as in men and women.
I did also say thirty, as in 4 years older than I actually am.
I’m glad I went to confession before my transplant, because some of the things I come up with to amuse myself may send me straight to hell.
Anyway, you can check out my Annabelle dress. The purple one was a recent gift and I’ve never gotten the chance to wear it out. I don’t have a personality, a life, and phone number to go along with this one.
Maybe, I’ll just be Hillary and stop with my social experiments. I can’t think of anyone else I’d rather be right now.
So this is how a young woman copes with her lack of autonomy. I’ve always prided myself on being Miss Independent. I never in my life thought I would depend on others.
This has hit me really hard. If I’m not standing on my own, then what am I doing? I didn’t arrange my life so I would be taken care of, but I am. I always will be.
I’ve never had a problem struggling. It builds character; I just think I have enough character right now. I’m tired. I’d like a break.

Breakfast- Cheerios with 2% milk, one cup coffee, 2 honey buns (my weakness)
Snack- H2O
Lunch- Whole wheat bulky roll with cheese & turkey (pre-packaged & heated), green tea
Snack- H2O, Tea, slim jim’s
Dinner- Shake n Bake Chicken, green beans, water
Total H2O intake: 1.5 L
Alanna had a good idea about posting my meals so others could understand what an accepted BMT diet consists of. I think this is great. I finally got my video on. I’m going to work on making this part more visually interesting.
We can do this Bridgette Jones style, except, I won’t be counting calories and cigarettes. I’m not a wild girl right now. I’m a fragile girl, and an up-and-coming health nut.
I’ll be counting food and water intake. EXCITING!!
I won’t be posting my weight, unless it’s measured. I don’t have a scale. I look, poke, and prod at my body to see if it looks the same. I compare myself to my sister’s weight, anything around 118 lbs is normal.
Fortunately, I’m so excited, I can cook! Last transplant, I could not eat, forget about cook, but I’ve worked on feeding the family into the schedule.
It’s all about knowing your limits. Know your personal schedule. Know when you personally have energy to accomplish goals. Set a schedule that is flexible. Include naptimes.
I prepare dinner in the morning and stick it in the fridge or slow cooker. Who ever invented the slow cooker is a genius. This requires planning ahead. Meat must be thawed in the fridge. I take frozen meat out of the freezer the morning before if I plan to use it for dinner the next day.
This takes incredible planning and organization. Cancer, in general, requires these traits. If cancer had a job description it may look something like this:
Must possess patience, flexibility, organizational and planning skills. No degree required. Must be willing to take initiative and complete any task within your physical ability. Must be willing to travel frequently for testing and meetings at a moment’s notice. May require overnights without reimbursement. Poorly compensated stressful, erratic schedule. Must be willing to put cancer first, take complete responsibility for your care while not under the hospital’s watch. Must be willing to sacrifice worldly roles and family for a period of time, must be aware that this will be a struggle and a life changing experience. Must know a range of medical terms, treatments, and techniques. These will be learned on the job. Requires determination. If you have any questions, you may ask your doctor or health practitioner.
Does this sound like fun? Absolutely not, but on my bad days, I approach cancer as my job. It is something that must be done. Ive worked out a tentative schedule to make life easier.
My schedule looks a little like this:
Whenever: Wake up, shower, coffee and breakfast (Always eat breakfast, it’s the most important meal of the day. Morning Meds
7:30- Wake up X and get ready for school. Take Temperature (86.4)
8:15- Jen picks up X or I will drive him
9:00-take meds (if I forgot them), prepare dinner if necessary
9:15- Rest, watch TV, blog or read
10:30- Exercise: walk, dance, yoga, trampoline, etc
11:30- Lunch, meds, Temp (96.6)
12- Rest, read, write, etc
1-2:30- Rest/nap
2:50-3:00- X home!
3:00- play with X
5:00- Dinner
6:00 Meds & in bed. Temp (99.9)
Completely exciting life, I know. It’s hard to fit in social time between my busy schedule of resting. I have squeezed in some home projects, then I get exhausted and cranky. Im going to start seeing some guests slowly but surely next week since I ONLY HAVE ONE APPOINTMENT IN BOSTON!
My line will be removed tomorrow, and I’ll get some more labs. Maybe, I’ll get some different prescriptions, but my line is done and getting pulled!
The fevers, which you probably noticed, are not significant since they are under 100.5. Who knows what they indicate, but it’s not an infection.
More good news, YAYAYAYAYA!! I’ve woken up extremely early this morning, but I don’t see this as a problem. I’m following my body’s rules right now. My body wanted to be awake at 4:30. I have things I can do by myself in the am. Ill probably take a nap by 10 am as it is, so there is no reason to restrict myself from sleeping whenever I feel like it.
I received a letter from Dana Farber yesterday, the first one I was excited to receive, informing me how I could contact my donor. We can have anonymous communication for two years. I didn’t think I’d be the girl who would get all excited to meet my donor, but I am. I want to meet her now! I want to know what language she speaks so I can write appropriately. I’m voting French, dark like me.
I think I’m restricted from sending her nice presents, but I will. I have her handmade card all made and picked. I want to know where my DNA came from. I think it feels like an adopted child trying to find their biological parents (even though I’ve never been in the situation). There is an innate need to know where the essence, the building blocks of your body, has come from.

Medco

video

Nutrition

video

Tuesday, October 28, 2008

Okay Food


I'm in a bad mood. I'm in a funk today. I think it may be the rain or the hissey fit X had on his way to school this morning. It may also be the fact that I over exerted myself with hanging my clothes in my closet, organizing laundry, and cooking dinner so now I'm tired and in pain.


I need to take it easier before my body kicks my ass for misbehaving. Unfortunately, since Im in a grouchy mood I'm going to pass on horror stories about America's inability to access health care. Believe it or not, I kept it rated PG-13.


I have some VERY VERY scary stories that I'll leave for another day. Here are my thoughts for the day. I tried to post you all a video with my last two postings, but again, blogger is acting up.


Inability to access health care scares me as much as the SAW series. I have horror stories from working. I have horror story from friends. I’m going to tell you about them. I’m in the mood to share my scary stories.
I want you to be scared, very scared. I want you to scream and holler and cry about how wrong this is.
After the election, Im going to post every politicians name, email, and phone number who is sympathetic to health care reform. Then I’m going to ask you all to blow up their lines with stories and rants.
Everybody who has known me through my life has known I’ve always been a “causehead.”
Yes, I did go to an antiwar protest with millions of people when I was over 8 months pregnant. No my mom and my boyfriend (now husband) did not approve. Not only because I was due anytime, but because they’re republicans and we just don’t agree.
I was raised republican, we can’t all be perfect.
No twenty-six year old should be placed on social security and disability only to come out of their pocket for insurance, not including co-pays, travel, medications, etc., etc., etc.
I am not talking about me. I’m talking about a nursing school friend named Erica. She’s my age, an RN, and disabled. She lives in Pennsylvania. This is not a problem that is limited in the US. This is what she said:
“I can't pretend to know what it's like to be living with cancer (I love how you phrase it like that), but I do know what it's like to live with some pretty serious problems of my own. And because of that I've been able to relate to many of your posts. Especially this one. I think it's insane how there are so many people dealing with such serious medical problems and then on top of that have to worry about whether the medication they take to keep them alive will be covered by their insurance (which they probably pay huge amounts for). It's happening to me too. I worked for a year as an RN and became disabled in 2006 after having an episode of junctional tachycardia. I was denied benefits for long term disability through my job's insurance so I applied for SSI/SSD for which I was finally approved. I receive Medicaid, but I still pay over $500 to my former employer for COBRA because Medicaid only covers doctors in the part of PA that I live in and my cardiologists and endocrinologist are all in New York. And after almost 26 years of seeing the same doctors and going to the same hospital, I refuse to switch to new doctors. And honestly, I live in such a rural area, I wouldn't see a doctor here anyway. So, I suck it up and fork over half a grand every month. Add to that copayments and my other bills, and it leaves me broke! Sitting here, thinking about it, I realize money plays a pretty big part of this issue but it's not the only thing. It's the aggravation we go through and the worry. I remember even as a kid worrying when my dad's job would change insurance providers if I would be covered because I have a "pre existing condition". (I swear we need to get rid of that phrase) An adult that has enough things to worry about due to their health should not have to worry about pre existing conditions and deductibles and copays, let alone a child with medical problems. Which is why I agree with you and in some aspects I know what you're going through. I've been there. I've been dealing with it since I was born. So, I just wanted to write you to let you know you're not alone and to help others who may not be dealing with these same issues see what it's like and to try to understand what we go through on a daily basis. The more we come forward with our experiences, the more people will fight for a change.”
Uh-oh. There are mor e people like me out there and we’re getting angry.
Unfortunately, her story also marks an underlying theme in healthcare system, inability to access care.
I’ve seen it before, no money, no insurance, no standard of treatment. For example, a twenty-eight year old relatively healthy man continually comes to the ER at Hospital X for treatment of fevers, headaches, sinus infections, ringing in the ears, discharge from the ears, pressure in the skull, and difficulty seeing over the course of three months.
He has no primary care provider. He has no insurance.
If he did, he may have had the CT scan that was indicated by all of these signs for his possible brain tumor.
Instead, he lost consciousness crossing the street and started to seize. He was brought in by medics.
I saw him in the nuero ICU with an intracranial pressure of 50. This indicates his brain is DEAD. Normal ICP is below 15, an ICU can handle up to twenty.
This man died of lack of care to due to lack of money. The insurance industry can deny it all they want. Most of us have heard urban legends about patients like this, some of us have seen it in action, and have allowed it to beat our idealism down.
I told my doctor once that I preferred if my insurance did not dictate my care.
He laughed at me.
My doctors are strong powerful intelligent men and women. I don’t understand how they can continue to be so submissive to the insurance industry. They have to change their scripts to what the insurance will cover for their patients. They change their care plans. They rewrite notes with the “correct” wording so patients can receive reimbursement.
Anybody who tells you different is lying. It’s a secret. It is kept hush-hush.

Monday, October 27, 2008

Post Transplant Nutritional Guidelines

I did it. I altered the nutritional information from Dana Farber. I couldn’t take the idea that someone else may be exposed to such boredom. Really, cancer patients are sick, tired, and probably throwing up considering food. The family is stressed and unable to concentrate. We want the information quickly and efficiently.

Make it stick and quickly.

Make it simple so we can stick it on the fridge for consultation.

At the end, give the numbers of the people we should call to reference

Lastly, give us extra pages attached to make our new gocery lists.

Make it like BMT 30 minute meals, ala Rachel Ray.

Possibly consider giving us meal ideas or suggestions regarding the best frozen foods, because this could be a huge change in lifestyle.Pack in some coupons for motivation

While I’m on it, what if I was Indian or Hispanic or Haitian, I don’t see any foods that pertain to me. Can I eat conche?

What about the new vegan anti-cancer diet kick? Are wheat grass shots okay?

This was possibly the most boring posting I made myself do, but IT IS IMPORTANT. Education needs to take into consideration compliance. No one is going to be compliant, or even read the information, in the current format.

We all want to be healthy, we really due, but its been proven that scare tactics have no effect on health actions. Don’t even try the scare stories. The most important factor in compliance is convenience.

Make this diet change as easy as possible, with coupons, simple recipes, suggestions of the best frozen dinners, my favorite personal advice is to use a slow cooker. How are cancer patients supposed to cook during their busy schedule of sleeping and throwing up.

I plan my cooking 30 minutes after taking my anti-emetics in the morning. I make dinner and stick it in the fridge or the slow cooker, this way, at 5:30, the meal is done or just needs to be shoved in the stove with some canned sides.

Microwavable food was a great idea. . . . in college. Now that I’m a grown-up, it makes me feel disgusting. Healthy choice makes it easier.

This would not be my final design for post transplant nutritional management, but the text is okay. It does need a little something to grab attention, like to make a shopping list along side a nutritionalist or resource manager.

I apologize in advance. My beautiful formatting is not so nice on blogger, but use your imagination.

In summary, it needs to be kept simple and convenient, then patients will comply.


NUTRITIONAL GUIDELINES AFTER YOUR BONE MARROW TRANSPLANT
It is important to continue following a liberalized low bacteria diet until your immune function returns to normal. your diet will be further liberalized at day 100 of your BMT.

The following are general guidelines for food shopping and preparation post transplant
:
• Check expiration dates on all products prior to purchasing.
• Wash tops of cans prior to opening.
• Wash counters, cutting boards, utensils, etc. with soap/cleanser and hot water prior to, and after contact with foods.
• Frequent handwashing by food preparers is recommended. Dry hands with paper towels.
• Wash dishes in hot soapy water or dishwasher. Air-dry dishes (do not use cloth towel).
• Replace dish towels and washcloths daily.
• Replace sponges every 2 weeks, disinfect with 1 tsp. Bleach per quart of water daily and throw in dishwasher or laundry every day or two to keep bacterial count down.
• Perishable food should be kept very hot or very cold. Avoid leaving perishable items out (at room temperature) for longer than 10-15 minutes at a time.
• All perishable foods should be cooked thoroughly
• Cook eggs until whites are cooked and the yolk begins to thicken
• During food preparation avoid tasting food with the same utensil used for stirring.
• Thaw frozen foods in the refrigerator overnight or quickly in the microwave. Do not thaw or marinate food on the counter.
• Do not refreeze defrosted foods.
• Use airtight containers to store leftovers. Refrigerate promptly.
• Leftovers may be used if stored properly and used within 24 hours.
• Grill only on gas grills with clean grills and test food temperatures (insert thermometer into thickest part)

Type of Meat Temperature (˚F)
Beef 165
Poultry 180
Pork 170
Ground Beef 170 (cooked with no pink remaining)
• Avoid free food samples at food displays at restaurants.

Microwave Cooking

• Rotate dish a quarter turn once or twice during cooking if there is no turntable in the appliance.
• Use a lid to ensure thorough heating and stir several times

Permitted Foods

IF YOU DO NOT SEE A FOOD YOU WOULD LIKE, ASSUME IT IS UNSAFE
UNTIL CONSULTING YOUR DOCTOR, NURSE, OR NUTRIONIST

FOOD CATEGORY PERMITTED

Beverages
- All types of beverage:
- Boiled well water
- Tap water
- Distilled water, such as Aquafina or Dasani


Meat, Fish - Canned or shelf-stable smoked seafood, pate, and
Eggs, Poultry meat spreads
- Well cooked meat, fish, eggs
- Home prepared tuna & egg salad
Well-cooked shellfish
- Factory-packaged sandwich meats, heated or steamed

Dairy Products - Pasteurized milk/Lactaid milk
- Yogurt
- Prepackaged ice cream and frozen yogurt
- Prepackaged hard cheeses:
cheddar, colby, Monterrey jack,
Swiss, American, mozzarella
- Prepackaged soft cheeses:
cottage cheese, cream cheese, ricotta


Breads, Cereals, - Prepackaged or homemade
Potatoes, Rice, breads, muffins, bagels, cakes, rolls,
and Pasta donuts, cookies
- Boxed hot or cold cereals (except
those with dried fruit or nuts)
- Cooked potatoes, rice, noodles
- Packaged crackers and snack food

Vegetables - Cooked vegetables
(wash well and cook thoroughly)

Fruit - Cooked or canned fruit
- Raw, thick-skinned, well-washed,
fruits, if unbruised:
oranges, grapefruits, melons,
bananas, tangerines, avocados; mangoes


Nuts - Processed peanut butter
- Packaged roasted nuts
- Cooked nuts (in cookies & cakes, etc)

Spices/Condiments - Cooked fresh or canned spices
(Add at least 5 minutes prior to the end
of cooking)
- Ketchup, mustard, pickles,
mayonnaise, sugar, jelly

Miscellaneous - Thoroughly cooked frozen dinners,
frozen pizza and canned entrees

Restaurant Food - No restaurant food
- No takeout food
- Avoid ALL salad bars and buffets for at least one year

OTHER NUTRITIONAL CONSIDERATIONS

It is very important to maintain your weight after you leave the hospital. If you have a scale, weigh yourself weekly. If you notice a weight loss of 5 pounds or greater, call your doctor. You may not be able to eat large amounts of food, therefore, you are advised to maximize the calorie value of the foods you eat by:
- Eating small, frequent meals/snacks.
- Adding margarine, butter, gravy, cheese, and non-fat milk powder to appropriate items.
- Consuming nutritional supplements like ice cream frappes, Carnation Instant Breakfast, Ensure, Boost, or other commercially prepared supplements. Making frappes with enriched milk.**
- Taking a daily multivitamin, folic acid.

**Enriched milk
Mix 1 quart of milk with 1 cup of dry milk powder, stir well and keep refrigerated. This will increase the calorie, protein, vitamin content of the milk.


You need to consume at least 2 liters (65 oz) of fluid per day to prevent dehydration and kidney damage.
Some people may have trouble digesting milk products after a BMT. Watch for symptoms of bloating, gas, cramps, or diarrhea after consuming milk or milk products. You may want to switch to Lactaid Milk, or chew Lactaid tablets when eating dairy products. Discuss this with your dietitian or doctor.


If you are being treated at Dana Farber Cancer Institute: Individual nutrition appointments may be scheduled by calling the nutrition scheduling coordinator, Nakiea Santos at 617-632-3006.

MORE GOOD NEWS!

Good News again today. I am exhausted from running all around New England, from my home to Dana Farber and back, but it was all worth it.
My labs look beautiful, almost textbook. My platalets are 258, double what they were last week and NORMAL.
My white count and red counts are coming up, 4.1 & 2.96 respectively. H & H are 10.5 & 30.5, which are both a little low, but nowhere near transfusable.
My chemistry report (with electrolytes and liver enzymes) looks fabulous. No problems there. I’m looking like a healthy woman inside and out.
I never expected this to go so easily so far. Knock on wood and keep praying please.
Prior to my transplant, I had visions of all the terrible side effects that occurred in my last transplant, rare, excruiciating, life threatening side effects, but I haven’t had any of those.
My little dot is probably the start of shingles. My acyclovir was changed to valtrex 1gm three times daily, which is stronger and just as user friendly. We need to drop that little spot on its ass before it gets any ideas, like trying to send me to the hospital for intravenous antivirals.
The plan is to go back on Thursday to remove my hickman line (I will no longer have an extra appendage), get repeat lab work, and then get another “You look fabulous” from Alyea and Melissa.
At that point, I’ll be able to travel to Dana Farber only once a week. My prograf levels will continue to be checked, as well as the rest of my labs and a general assessment. I need the once over weekly.
At some point, my levels will begin to drop again. This is to be expected as the donor cells take over.
I’m going to explain the process in the analogy of falling in love.
The donor cells need to take their time to learn about me. I’d prefer that they be cautious and thorough, like exploring a new lover. I need to be strong enough to allow this in my life. My donor’s cells need to be comfortable with me and understand my body before diving head first. Neither one of us would want to get hurt.
During this period of getting to know each other, my cells will wane and make space within my body for the maturing & growing donor cells.
I’m slowly letting my new soul mate move in. I’ll start losing a part of myself to be replaced with them. For this to be allowed, my numbers have to dip. I have to give a piece of myself. Quid Pro Quo.
This is expected. It does not indicate a failure in treatment or a huge health setback.
Remember, it’s like falling in love. We both need to give and take until we can co-exist together, and then ultimately, settle into our permanent lifelong roles, where my immune system no longer exists.
I love this kind of theoretical science. It’s a little science, it’s a little bit art, it allows something very structured to walk a thin line.
I hope this helps you understand the process a little more clearly.
It’s a delicate balance, and this is the reason for my severe restrictions. I am home, but I would prefer to be left alone for the remainder of the week.
It is nothing personal, but I am too fragile right now. I do not want setbacks. I need rest. I’ll enjoy visitors next week if anyone is interested in visiting.
I’d prefer if you call first. I can not see you if you are sick, a getting/getting over being sick, have been exposed to someone who has been sick.
You must take off your coat and shoes in the mudroom.
You must immediately go to the half bath and wash your hands, put on a mask, and don gloves.
I’m not allowed to hug or touch you right now. Please sit on the couch in front of the windows.
I’m sorry to be so strict. I obviously miss my socialization and it is very difficult for me to remain isolated. However, I like my life better, and these are life or death restrictions. Thank you for respecting them.

Sunday, October 26, 2008

Clean House

video

Post transplant Home Cleaning

Having your house cleaned prior to leaving the hospital (or hotel) is a pivotal part of post-treatment care. It may require calling in the troops to help. It will DEFINITELY not include any participation from the patient.
The patient, lucky you, must take a hands-off approach to housekeeping for a minimum of one hundred days, but everybody heals different, you may be out of commission longer. Your precise plants will have to go (I could never get them to survive anyway) The pets will have to find safe homes for a while, since they can get outside and roam, picking up gross bacteria and fungi.
I am fortunate that I have a wonderful Aunt who will donate a write off her time as our housecleaner. She is a hug blessing, and a relationship saver. I recommend a helper to every cancer patient if you can afford one or if someone will donate their time.
I just wanted to write down for you what will be needed before I return home and during the period of my disability. I will not be able to participate in cleaning for a minimum of 100 days post transplants. Ive been told it may take longer to recover and everybody heals at their own pace.
This is a note I started to write to my aunt:
When I’m gone, prior to my return home, we will need:
We need all the basics: kitchen, bathroom, and floors.
If you don’t mind doing some laundry, that would be great. It needs to be done on hot. If not, this is something Jon can manage. Cut this out when you’re in a hurry.
Also, cut mopping out if you’re in a hurry, but please try to get at least vacuum.
Jon and X will survive if the sheets aren’t changed weekly. Don’t worry about it.
Prior to my return is DEEP cleaning:
Windows will need to be washed with a basic glass cleaner. Walls will need to be scrubbed with soap and water. EVERYTHING needs dusting, everything, I use pledge.
Curtains& linens must be washed in hot water.
The bathroom does need special cleaning above and beyond the above and what you do weekly. It will need to be cleaned weekly until my hundred days. Jon will have to scrub the counters, shower, and toilets daily. This is only for my bathroom on the first floor.
I’d use an antibacterial (Clorox) cleaner on all the surfaces. No more green products, I need strong killers.
All the furniture needs to moved and the carpets and floors need to be cleaned and steamed. I was so lucky that servepro donated this service. They also cleaned my upholstery on my couches and my mattress. I recommend this method of hiring people is you can afford it. Cleaning is exhausting. Patients can’t do it. If you can’t afford it, gather as many friends as possibly, you’re going to need all hands on deck.
My fabulous friends also removed everything from my cabinets and drawers and scrubbed the interior! God bless them.
All my clothes were rewashed using hot water. No is not the time to be eco-friendly. I worked so hard to help reduce my carbon footprint, now those urges are gone.
I can’t play in the recycling, take out the trash, or have a compost pile. No indoor garden or exposure to plants. Resist the urge, now is not the time to save the planet.
My pets are being babysat at friends and families home. Free ranging pets cannot be allowed in the house if they run around outside. I, personally, decided to send them away. They are a burden when you are exhausted and I can’t keep up with the hair.
I can’t think of anymore cleaning necessities. I’m getting exhausted just thinking about the energy involved. One again, thank you friends, you rock and make my life so much easier.

I Have Shingles, They are Not on my Roof

I have Shingles, and not on my roof. I do, actually, have shingles on my roof, but these are not the kind that are concerning me right now.
I actually have one little spot that looks like a shingle on my chest. No big deal, I have an immune system that will wipe it out.
Wrong, I have no immune system so I’ll be calling my doctors and praying I don’t have to go to Boston.
It looks like a pimple. It itches a little bit. It does not hurt, but its located along the exact line where my previous shingles were. I don’t have a fever, this is vital.
I’m calling after breakfast. Please don’t blow up my phone and yell it me for not taking proper care of myself.
I’m taking my prophylactic acyclovir (just in case antiviral), but there is one spot.
“Out, damn spot, out I say.”
I’ve actually just paged the allogenic stem cell doctor on call, who happens to be my doctor.
He looked terrible on Thursday, like he was coming down with the flu. I hope he took a day off. Severe colds and the flu can feel just as bad as cancer, these just don’t last for years and they don’t kill young people.
I have an innate need to care for sick people, my doctors are no exception.
I’m hoping we can just wait and see each other tomorrow. Maybe I can just send him a picture to show him it’s really nothing that needs to be addressed now. Maybe he’ll send me to DHMC. I’m really hoping I can just stay in my nice cozy home all day, but we’ll see.

Cancer Comes with Great Presents

Sometimes I wonder if my cancer is worth the presents. I think about all the great things I have been given, and think, maybe the cancer card is not so bad.
Then I come back to my senses, and realize, nothing is worth the amount Ive suffered, the pain of I have caused my family, or the changes to my life.
I’d give everything back in a heart beat, but I don’t have to. I have cancer.
I got a WII fit from my brother and his girlfriend yesterday! I’ve been wanting one forever. I’d never splurge all $80 for this on myself. It will be a great rehab tool for winter. I can do yoga and do soccer moves. I can get a game to improve my balance, which I do really need.
I’ cant be falling all over the place anymore.
WIIs have started to be used in rehabs all over the country. Sullivan County Rehab has one. It’s a game of the future. The Jimmy Fund room has one. Video games are up and coming in cancer care.
Dana Farber also has a cell killer game based on the theory that you can visualize and train your brain to heal yourself for kids. I’m not sure how successful this is yet.
I’ve received beautiful upper and lower cabinets for my basement. I also received a concrete patio underneath my deck. I’m glad I freelanced in construction with dad for the past year, for free. Those friends can really come through to make me feel better. Thanks guys.
I’ve also received a thousand dollars just for me, to make me feel better. I thought I really could blow it all. I can’t in good conscience do that. So I will not be buying the Bose portable speaker with the auxillary port for $500.
I did buy an interior Surius radio speaker with a sub woofer for $150 because I all ready have the subscription. It sounds really good. I’m excited. I do better if I can blare my music and pretend I’m a teenager.
I did spend $120 on dresses. This was when I was awake all night the other night and became frivolous, but they’re so gorgeous. With tights, leggings, and knee high boots in style, I can wear them all winter. It did make me feel better.
I will probably be buying my Tiffany’s necklace for $195. I’ve been after it since I saw it.
It’s still incredibly hard to justify this kind of spending with my budget, but they said I could spend it “however I want to.”
Please try not to judge. It’s very easy to point fingers and tell me I’m misusing what I’ve been given. If you haven’t been in my situation, you don’t know. I’m trying to explain it to you.
I’ve gotten checks like this before, but I always end up spending it on groceries or Xander, because it decreases my anxiety about the future.
Right now, I’m not much of a planning for the future girl. I want some self esteem.
My insides feel ugly. I’m in constant pain. I don’t feel like myself.
I’ll be better if I look okay on the outside.
So I’ve tallied up $465 so far. The rest will likely go to Christmas presents. I can certainly do my Christmas shopping for $500.
I’m going to enjoy it.

Saturday, October 25, 2008

Coming Home PTSD

I’m anxious. I’m glad I have my blog as an outlet, because I think I have post traumatic stress. I’m not post anything. I’m still waiting for the shoe to drop. I’m waiting for the bad news. I’m waiting for the setback, my reoccurrence, anything awful.
I’m home now, and I’m amazed at what health care professionals depend on patients to self report. For example, I need to watch my temperature, anything over 100.5 I must immediately report. My life depends on it.
Any redness, itchiness, or oozing from my central line must be reported before I get septic and become confused. This can occur very quickly. One time, my line go infected, I didn’t realize I was in trouble until I called the doctor and wasn’t coherent. By the time I reached the ER, my blood pressure was 50/30 (120/80 is normal) from the diffuse dialation of my circulatory system as a response to the bacteria.
I felt great from the endorphins. I was very relaxed. It’s a comfortable way to go down. It’s quick I vote septicemia for my death, in my 80s.
It took 4 liters of saline to compensate for the dialation, but it didn’t, my blood pressure remained 60/30. I got an overnight in the ICU where I got the rigors (uncontrollable shaking from fever, seizure-like).
Three days later when I decided it was time for my body to suck it up, I played mind over matter and took a nice hot shower. I ended up naked, passed out on the floor. I couldn’t reach the pull chord.
When I did the nurses kept saying I fell and needed to stay in bed.
I kept saying I just sat down in the bathroom because I felt light headed. I sounded like every single one of my patients who had ever experienced the same problem.
The nurses countered with the fact that I was naked, sleeping on the floor, but I had my story and I was sticking to it.
I need to report any rashes, that could indicate GVHD. Any change in bowel habits, any sores, excessive vomiting, neurological problems, urinary retention, sever pain, etc., etc., etc.
All I can say is if our providers are so dependent on us to relay our symptoms, patient education needs to be improved. It needs to be made interesting.
I have a 5 page essay outlining how patient education needs to, and will, eventually be changed. I’ll bore you with it some other time.
I feel like I have a lot to say. I’ve researched my situation like my life depended on it. I can’t go down and take my information with me. I need to get my thoughts out.
I wonder if I’m pleasing God, and if this is what he has in mind, and if it is, then do I get a pass from all the scary side effects. I’ll have to reference Fr. Stan on that one.
I’m also (gasp) starting to make plans for the future. I need to stop immediately. I’ve made plans before. Then I relapse, I have a set back, and the news is so much more difficult to take because I have started to think about my bright future.
I’ve been accepted on four different occasions to graduate school. My first relapse occurred after I started my classes. Those people have graduated by now. Every other time, I’ve relapsed immediately after my acceptance. I’m not applying anymore, but then why did I bust my ass to get my 4.0, graduate number one in my class, and rack up all sorts of latin awards?
I am stalked by grad schools. Everyday I get job offers in the mail, mail from colleges recruiting me, and medical bills. I don’t even have a license.
Then I think about how I’ll get my license, do I take the class or challenge the test? Who cares? I don’t need a license right now.
I should be planning my canceration, where I go someplace warm and foreign to celebrate my survivorship.
But no, I’m planning out my dream job in my head and working out the details, like what grant I’ll write and who I’ll smooze to create the position I designed.
I don’t work to live, apparently, I live to work.
Currently, I’m trying to get attention to the issues that we as patients face. I want my ideas to be exposed in a young, urban, sassy way (ala me). I hope people are listening and considering what I may have to offer in the future.
There has been a change in the demographic of cancer, it is becoming younger. This is an observation, it is also a fact. Art is beginning to imitate life, and there has been an insurgence of education and support groups geared to the 18-40 set. I want to take it up a notch.

I AM HOME

I AM HOME!! Right now, as we speak. I have some plans to ride around in my safe, clean car with my family and not get out. At least I have my siruis satellite radio to keep me amused. I just want to experience the last bits of autumn, my favorite season, which I virtually missed while I was in isolation for three weeks.
I videotaped my ventures yesterday so you could join me in the life and adventure that is my life, but my computer was hating on me yesterday. It is currently trying to deny my video, AGAIN.
Thankfully, with all the flexibility it requires to be a cancer patient and be on-call for appointments on a moments notice I’m using this concept I’ve discovered called patience.
PATIENCE is vital to be a patient. A degree of flexibility is also necessary. No matter how perfectly your treatment is planned, there are always possibilities. Since you now have time on your side, take the set back in stride.
Throw yourself a mini-pity party, and then readjust, Remember Darwin and The Theory of Evolution, If you fail to evolve, you die. This has been my personal motto. Im constantly readjusting myself, reinventing myself, exploring new talents, in the hopes that my mind will remain strong, and I will survive.
ARGGGHHHHH. The computer is doing it again. I only have three videos for you to see. This shouldn’t be so complicated, but it is.
Now, I want everybody to be clear on this, just because I’m allowed back home does not mean the fight is over. It’s the opposite. My white blood count, and red blood count are just now falling, meaning Im a huge infection risk, and I may in the future require transfusions. My prograf levels are being monitored frequently.
What does this imply? I have rules for visitors and people. These are extremely hard to enforce. NO HUGGING. We all have the urge to run to each other, but don’t do it. I am fragile. We can hug in January.
Visitors must take off their shoes and coats in my mudroom then go directly to the half bath to wash their hands and put on their masks.
Unfortunately, the world is a health hazard to me, please be respectful. Ill update you more later, because now, I’m hanging out with my family!!!

GoodBye Lobby

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Bye Dana Farber (Until Monday)

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Seeing xander

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Friday, October 24, 2008

Sterile Procedure

I don’t want to leave Dana Farber with a bad taste in my mouth, but my worst pet peeve EVER is when I feel a professional is taking advantage of a patient’s lack of knowledge to be lazy and cut corners. Don’t try it people! But also, readers, don’t be entirely scared. This is a rare phenom.
The dressing nurse put me in a nasty funk. There is no way to send me from 0 to 60 in two seconds than to fuck with sterility of my line. I have a hickman, known as a central line, because it goes directly to my heart. An infection means septicemia, a bacterial infection of my entire body. I am immunocompromised. I do not have a fighting immune system. Previously, I was an infection control nightmare, with two line infections and a mediport (an internal IV) that had to be yanked.
Dartmouth had great numbers when it came to patients NOT having line infection. I went and wrecked all their good numbers. There is no way to make me freak out faster than not changing it perfectly. I know what you’re doing.
I know I look twelve. I get asked daily if I’m at Children’s. Cancer is age defying. An admissions clerk once asked my sister (identical) if she was my mother.
This man obviously did not know I was a nurse. He assumed I had no idea what he was doing. It was bad enough that I had to bear my chest to this man who looked like MR. T with his broken teeth and gold earrings.
Definitely looks like a felon to me, I’m not judging, but under normal situations this man would never get close enough to get his grimy hands on my chest.
He also, had the nerve to tell ME somebody had obviously told me something WRONG, and he was doing the procedure properly after I told him he needed to put on a mask before doing anything.
I don’t know where that mouth has been! Keep your germy breath off of me.
I wanted to tell him Not to under estimate me, bitch. I know exactly what you’re doing. It’s amazing what people will do when they think you don’t know.
In all honesty, this situation has only occurred in two other situations in my years of care. Don’t go getting scared of everybody, most people do their jobs properly, and generally want you safe as a patient.
Except for one nasty radiology nurse, who decided I had to much attitude to treat and pretending to look in my chart for a Benadryl order from the surgeon who had just removed my line.
I have never seen a surgeon, just for fun, write an order for Benadryl when doing something as simple as removing a line. THERE WAS NO ORDER IN THAT DAMN CHART. Bitch, Find the damn surgeon.
I’ve decided since then to no longer use the word bitch to start my sentences.
But I was septic. I was itching head to toe. I have never wanted to tear my skin off so badly, and this woman decides to stick me in a corner because it’s Christmas Eve and she wants to go home to her family.
We all do lady! Not all of us have this possibility.
In this case, even though I told the nurse that there was no order for Benadryl in that chart and she needed to find the surgeon. Her ass walked away huffing, talking about “nobody talks to me like that.”
Actually, septic, loud mouth cancer patients do, and when I got back to the unit to discover my heart rate was 180 beats per minute (60-100 is normal) and my temperature was HIGH, meaning above 105 or too high to register, all hell broke loose. Her ass got reported as fast as I got treated.
I did have one other situation with my line, and a nurse who changed my dressing improperly. I reported her before her car left my driveway. Her supervisor was very upset. The nurse responded that “She was sorry if she offended me, but she did nothing wrong.” I told her supervisor if she thought she did nothing wrong she needs to be kept away from immune-compromised patients and be re-educated, right before I told her exactly what she did wrong.
Moral of the story, I know you’re messing with me and I’m not going to let you get away with it, no matter how sick I am. I’m lucky I have the education I have. I’m glad others don’t know the process, as far as a sterile dressing change of a central line, I’ll break it down.
Both the patient and the nurse should wear masks.
The dirty dressing should be removed with regular gloves. The sterile line kit should be opened with the clean gloves.
The dirty gloves should then be thrown out, and the sterile gloves in the kit removed, and placed on the nurses hands.
The procedure is now sterile. The RN can’t touch anything outside the kit.
She’ll scrub your site with alcohol. Let it dry.
Sometimes they’ll place a piece of gauze over the site or leave it visible. Then they’ll put the dressing, a clear film like bandaid (tegederm) over the site.
They’ll then label the dressing, change the caps, and flush the lines.
This needs to be done once a week.
This is how it’s done, properly. You don’t have to memorize it, but every little bit of knowledge helps. Knowledge is power people. Use it.

Going Home!!!

I have good news people!!! I am so excited. I’m coming home tomorrow. I get to be a once a week check up kind of girl at the Farber.
On paper, I look fabulous. A little water chugging, and my creatinine was back to normal. I’m wondering if I can just take some tubing and bags of fluids home with me and administer them myself. I have my line, it’s an easy task, and I’m guaranteed to stay hydrated. It’s a win/win.
I did have a little flank pain (pain in the low back above the hip bone). These are times I battle with knowing what I know, Do I tell about the flank pain because I should or do I omit the information so I don’t draw unnecessary attention to my kidneys. I did eventually tell them. I’m erring on the side of caution know.
My WBC and RBC have plummeted, but that is the chemo working. I’m no longer taking neupogen to grow my immune system, it’s me know. My H&H also looked good 9.8 & 28.9 respectively. General they transfuse for a hematrocrit less than 26. I’m in the clear!
My platelets are holding steady at 122 (155-410 is normal) Thank fact that I have them 14 days after transplant is wonderful. I can also use a regular toothbrush! No flossing yet, but I’m a step back towards my pretty teeth.
One step closer to home, a fresh clean home due to all the wonderful friends we have where I can cook full meals, in an oven, and start putting my life back together in small steps.
YES, I feel good enough to make dinners for my family! How exciting, and I’’ll get to see X in his costume.
Believe it or not my Chem& was perfect, flawless. My liver function tests were high the other day as a side effect from the chemo regimine, but they are going down nicely.
My liver is a trooper! She has been through a lot and she’s sticking by me!
As far as other transplant news, I’m all ready starting to have some weird personality quirks. Believe it or not, I’m a frugal, frugal girl. I hate coming out of my pocket for much. I generally like to put myself together nicely, and look expensive, except I’m an outlet, clearance rack kind of girl. I can be because I’m an abnormal size.
Anyway, I’m getting cravings to by earrings! I have bought one pair in my entire life. I never really front on looking pretty, but now I’m having trouble containing myself. I want my Tiffany’s necklace, which my friend so graciously gave me the cash for. These are words would never have come out of my mouth before, but it’s like cancer armor, if my insides suck then I want to look okay outside.
This happened after my first transplant too. The first things out of my mouth were “Heather, do you have blush and lipstick?”
I was never a make-up girl. I had never ever said those words before. I was bald, in pain, with skin sloughing off, what the hell are blush and lipstick going to do to improve my looks?
Now I’m after pretty jewelry. I have pretty jewelry, a lot in fact, but believe it or not, this is the product of my son and my husband. Jon wants to me appear a certain way, specifically expensive. My jewels are things he wanted me to have. I can’t complain.
I’m also after a pretty dress for winter, just one. I think I do deserve a cute little outfit for my troubles. I’m going to do a little retail therapy celebration. Every girl needs this. It’s therapeutic.
Bankruptcy, however, is not therapeutic. It’s theorized there is a “shopping high” created from rushes of dopamine and serotonin dumping into you system when you shop the same way an antidepressant would. Watch out. An estimated 15 million of Americans are compulsive shoppers, and 90& of those millions are woman, so beware of the cancer card at times.
I’ve been infused with girl genes. This is clear. It’s happened twice now. I don’t think it’s going to cure me of my tomboy ways. I may get little character changes, but I am looking forward to some combat sports in the future. I’ll go play some soccer when I can actually move. I get to go outside without a mask! I’ll start with my walks again immediately. I can exercise as my body tolerates. Eventually, I’ll start running again.
Here is a great statistic I Learned from Khris Carr of Crazy Sexy cancer Fame, The body heals 8x faster with exercise. Exercise is actually a relatively unexplored area of healing, but if you do a little analytical thinking, the body has two circulatory systems, the blood and the lymph. The blood is circulated by the heart’ s pumping. Exercise allows the heart to pump more efficiently.
The lymph system, however, needs a hand, this is why we exercise. Without movement, the lymph will remain stagnate in the tissues waiting on the lymph system to carry off their waste that are stuck wallowing in toxins. The lymphatic system is in place to help carry of toxins and detoxify through the addition of nutrients and oxygen (through exercise) that can be excreted out through the liver. It needs exercise to give it a little push along.
That’s my simple pathological response to why I need to exercise. This goes for others in general. I’m starting with walking and bouncing on my mini trampoline, I’ll step up from there.
Those are my tentative plans for my move. I’ll be sure to let you all know how that goes. It’s amazing, many people will think the battle is over, but I’m still far from done. I’ll give you more details on that in the future.

Thursday, October 23, 2008

Congratulations to Me!!

Good news! I couldn't leave you in the dark all night. I get to go home tomorrow!! I need to be seen twice next week, due to protacol, but my labs look fabulous. I do get the right to call and be squeezed in anytime at DF, and DHMC gets to be on back-up if something happens after 1:30. But nothing is going to happen, because I am in great shape. Even though I do love my people at Dartmouth. My NURSE PRACTITIONER, Melissa, which I wrongly reported as a PA, is now a Hilary fan. I knew I'd sneak under her skin. So I'll give some more details tomorrow, because right now I'm having a little celebration. YAYAYAYAYA.

Hotel Living

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Dancing Xander

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