It's Been a Tough Year

It was a tough year, but I made it !!!But not everyone is as lucky as I am...... 

The economy is so bad that I got a pre-declined credit card in the mail. 

I ordered a burger at McDonald's, and the kid behind the counter asked,  "Can you afford fries with that?" 

CEO's are now playing miniature golf. 

If the bank returns your check marked  "Insufficient Funds," you have to call them and ask if they mean you or them . 

Hot Wheels and Matchbox stocks are trading higher than GM. 

McDonald's is selling the 1/4  'ouncer'. 

Parents in  Beverly Hills and Malibu are firing their nannies and learning their children's names. 

A truckload of Americans was caught sneaking into Mexico . 

Dick Cheney took his stockbroker hunting. 

Motel Six won't leave the light on anymore. 

The Mafia is laying off judges. 

BP Oil laid off 25 Congressmen. 

Congress says they are looking into the Bernard Madoff scandal. Oh Great!! The guy who made $50 Billion disappear is being investigated by the people who made $1.5 Trillion disappear! 

And, finally... 

I was so depressed last night thinking about the economy, wars, jobs, my savings, Social Security, retirement funds, and our bleak future, that I called the Suicide Lifeline and was connected to a call center in Pakistan. When I told them I was suicidal, they got all excited, and asked if I could drive a truck

Tis the Season

It's 10am on Mon and I'm exhausted all ready. 

Yesterday, I finally realized I hadn't taken a day off to rest since I was discharged. That am I woke up at 4 to my vomiting child. Thurs. he had a fever and I finally called my opthamologist about the pain watering and swelling in my eye only to be told what I was experiencing was an EMERGENCY and needed to be treated NOW. 

I could have an object in there constantly scratching my eyeball. I could lose my sight. 

She must have thought I was crazy trying to convince her I was fine and it could wait. 

But it didn't.

 I dragged x out only to find out she was right, the pain I'd been dealing with for a week was an emergency. I had mucous in my eyes that had hardened and was scratching me as I blinked.

 My tear duct plug was intact. The mucous had no doubt come from my sinus infection. 

Then we went to pay taxes and arrived during the town's lunch break. 

Friday I wrote about. 

Sat. We went christmas shopping as a family. 

And we are done!! Well, for the most part. 

So tomorrow I'm scheduling in a whole day of rest and hopefully most of weds. Too. 

Sorry to the commenters I haven't responded to. 

I will. I'm thinking.

 I'm excited this is my very first christmas season that I have been able to fully enjoy as a family woman. 

I've been able to shop and wrap. I've baked dozens of cookies. We decorated the tree and house beautifylly. We're doing family breakfast at our house. 

I'm so excited that I FINALLY had this experience. I've also gotten a little of the stress of it all, but that' part of the fun, right?

Feelin' the spirit

I'm a FINALLY totally and completely feeling the Christmas season.
The tree is up and looking beautiful.
We had "cookie day" at my mom's, our yearly tradition of making 5 different batches of twenty different types of cookies. Xander got to tag along due to his stomach bug, which not only made him throw up Weds, get a low grade fever Thurs., and have an upset stomach with "'rria" on Friday (We all know what that is and I bet you can all guess who else in the family has it today.), but also turned him into a possessed child.
We've seen Santa and scouted lights.
I had an awful, grouchy, crowded shopping experience yesterday at Walmart.
I've wrapped and am finishing shopping TODAY And "Santa Baby" is up on the playlist.
I'm feeling the spirit.

Isn't it Ironic

Oh, the irony of it all.
I was discharged from the hospital Tuesday evening later than I ever expected.
My fate had gone back and forth all day so when 4:30 pm came with the announcement of "Okay, we're sending you home tonight." I was a little surprised.
Of course, I told them everybody who could pick me up was working so not to worry about me. . .
but anyway, that's a tangent.
It was perfect timing. J had a meeting and was driving South on I-89 when I called with the good news.
Or so I thought it was good news.
I thought it was good news until 4 am when I heard a little voice saying, "I think I'm going to be sick."
It might as well have been a fire. It may have well been a bomb threat the way I whipped out of bed and screamed, "Get to the toilet!"
There are very few things that can make a person move faster than the threat of being vomited on in the early am.
They should make an alarm clock special for parents of young children with the sound of a child gagging or hurling.
When that stops working, they could have that same clock squirt just a little water onto their hips or thighs.
That's always a surprise too.
I don't remember if he threw up in the toilet.
Auto-mom was turned on.
I know I put him in the bath (didn't you know a bath fixes everything?), and found a couple "sick buckets."
After the bath I made the obligatory "floor bed" in the living room and got X a water bottle full of ginger ale in between vomiting.
Thankfully, he was all done with the hurling by 5:30 so I put in a movie and fell asleep.
I don't remember what time he woke me up again.
I do know I was up by 8 am calling the school and then the in-laws.
Thank goodness for good in-laws. They've been worth their weight in gold these past couple years.
By 8:30 he was out of my hands and onto theirs, during my father-in-law's vacation no less.
I wish I could say that was the end of it, but you all know this girl can not get a break.
What did X have this morning?
A temperature. Ugh. Isn't that supposed to come on first?
And it wasn't high enough to keep him on the couch all day, no he thought he could play and wear me out.
Not so, I never thought I'd be a parent that said this, but thank goodness for video games and an extremely autonomous 7 year old (the kid can feed himself meals if he needs to).
Now, I'm off for some much deserved good nights rest.

Me and My Disease

My Hodgkin's Lymphoma and I have a special, love-hate relationship that I doubt anybody but myself truly understands, and that's if I really understand it at all.
I'm not quite sure I do, but I'll try to explain it to you.
Hodgkin's Lymphoma has gained a reputation as "the good cancer," or even in some instances, it is not even considered a cancer and is dubbed "Hodgkin's Disease."
Early on, when I was considering myself lucky to have this diagnosis, I was blessed with my almost all-knowing (he is human), but at the very least all-caring Dr. G, who explained to me that I was not "lucky" and I certainly did have cancer.
Now, anybody who has been following my postings knows that Hodgkin's is certainly a cancer and it definitely has not been good to me.
Through the 4.5 years since my diagnosis in April 2006, I've come to realize that the 90% cure rate is for those who were diagnosed in Stage I or II of their process.
Sufferers, such as me, who were diagnosed in Stage III or IV, have closer to a 65% survival rate.
Unfortunately, this information came after years of suffering and not in time for me to throw a hissy fit to expedite my diagnosis and treatment. In fact, I was reassured that postponing treatment and allowing for some growth would not affect my overall outcome.

With this considered, I'm relatively confident that this finding occurred in the past four years or so after it would have benefitted me. 
So how did I get HERE?!!
For those of you who may be new and do not know where "here" is, it is a nasty place where I've received so much treatment that every treatment is harsh and is accompanied by SEVERE side effects.
For this reason, I  decided this past summer to treat my cancer like a chronic survivable disease. The goal is to gently control my cancer with the lowest dose chemotherapy possible with the least amount of side effects.
Ironically, my decision coincided with a great article in "The New England Journal of Medicine" entitled "Less Intense Hodgkin's Therapy Matches Standard."
For those of you who don't know, now you do, "The New England Journal of Medicine" is the alpha publication for the best, most current innovative findings in medicine. Please take time to see the article, if only to familiarize yourself with standard treatment here (You'll get why I'm going into this in a second): http://www.medpagetoday.com/HematologyOncology/Lymphoma/21634
I received the standard treatment starting in May 2006.
This was 4 cycles of ABVD therapy. ABVD is an acronym for four different chemotherapy agents given together. These agents are: doxorubicin, vinblastine, bleomycin and dacarbazine.
At the time I received the ABVD therapy, I was a otherwise healthy 23 year old, athletic, non-smoking, social drinking, Registered Nurse. I ran and played soccer for fun.
The side effects were minimal.
It did not cause issues with my electrolytes or my "counts." I was never once hospitalized during my entire ABVD therapy.
I described it as a "five day hang over with better med control." I didn't even lose my hair, and one study found 30% of chemotherapy patients lose their hair as part of a "placebo effect."
I was not one of those people. I was honest with myself about my disease, my prognosis, and the possible side effects of the chemotherapy I was receiving.
I would take it on Monday and be out partying on Friday. I was able to pick up my son from day care every day. I required one long nap per day. I could still cook dinner daily. I would clean my house top to bottom weekly. My biggest complaint was mild nausea (hence the hang over people and it was a wine hangover not a tequila bender hangover).
In the years since I've received some of these chemo agents in different regimens in an attempt to kill off my disease.
CURRENTLY, I AM TAKING VINBLASTINE ALONE TO CONTROL MY CANCER.
I want everybody to be very clear on this.
I am taking one medication of the four I started with in 2006.
I am confident and well cared for at Dartmouth. Over the years I've formed a great relationship with so many of the providers there.
Dr. G stated yesterday that he is given advice "almost daily" from other well meaning Doctors who want to see me happy, alive and thriving.
I am receiving the smallest dose of therapy possible as decided by both Dr. G at Dartmouth and Dr. A at Dana Farber.
What I assume has happened is the cumulative effects of all the chemotherapy in the past four years has taken it's toll.
It is not the choice of chemo.
I have very little disease currently.
And, EVEN BETTER NEWS, I will not be receiving anymore therapy until January.
I have the whole holiday season to enjoy.
I hope this clarifies things for those of you out there who love, care, and worry about me.
I'm still in good hands.
I am working on how to supplement my immune system to regain some of its strength, but I highly doubt the chemotherapy is the sole source of my trials.
Thanks so much for all the love, prayers, and concern. Keep it coming.

How to Shower with an Extremity Line/Wound

Life Happens
People get stitches on their arms/legs/hands or they need to have an access line for medications such as a PICC line in their arm or a central line in their femoral artery for antibiotics or chemotherapy.
Again, life happens.
But Wounds and dressings must be kept clean and dry.
So what is a person to do to keep up your every day hygiene.

After years of trial and error, I have the answer:

Tools:
platic bag, sandwich or gallon, depending on the size of the affected area
silk medical tape (available at pharmacies everywhere)
piece of absorbant cloth

1. Strip like you're getting ready to shower
2. cut a line in the bottom of the bag so you can now stick you hand or foot through the plastic
3. move the bag up the extremity to cover peripheral access site
--from here there are two options--
Alternate option 4- condensation will accumulate inside on the dressing if you take a hot shower, to avoid this cut a portion of a towel/washcloth, etc. to cover the bandage directly then take the silk tape and circle the area to keep the cloth in place, then tape each side of the plastic bag in a circular motion to keep water from leaking in and protect your wound. This is the method I prefer.

or

Alternate option 4- Take the silk tape and tape the plastic in place half on the bag and half on the skin and then reinforce it. Do this to both side.

5. Hop in and get clean.

MYTH- GLAAD Stick and Seal does not stick and seal an protect from water all by itself. You can wrap your site, but then you must cover the entirety of it with a good medical tape for it to be affective.

Paper tape is not effective. It will fall off and apart mid shower.

Whoa, what a week

Whoa, sometimes, I just don't know. I don't know how I ride this roller coaster and keep hold. I don't know how I've kept my sanity along with my health. Yesterday was national "Believe Day." I hope everybody can stop today and find something to believe in. One of the only ways we can stop fear of these diseases, or anything, is through control and education, through taking what those of us have gone through before and sharing it so others know how to cope and that it really is possible to handle, even if you lose your mind a little bit. I felt great last week. Better than I had in forever. Of course, I had some health care nussances hanging over my head. The plug in my left eye to keep it moist had fallen out leaving my left eye burning and painful. I had called to request my handwritten narcotic script be mailed two days after I last saw my heme team. Well, I ordered something off ebay and it arrived from China, but I didn't get my damn scripts forcing me to ration and leaving me in pain. Then, Friday, my normal speed mom's life caught up with me (ie basketball games, christmas shopping, parties, etc.) And I spiked a temp of 101. That is a do-not-pass-go head straight to the ER fever. So I did....at 11pm. My sinuses had been causing me misery, my chest xray showed up clean, I gave blood cultures and FOR THE FIRST TIME EVER was discharged home with sinusitis and oral antibiotics!!! Hoo-ra! My numbers were stable. I went home to sleep and sleep and sleep. I woke up to take my medicine. I. Woke up to try to rally for J's holiday party, which included waking up, shooting out of bed, throwing up and taking handfuls of meds in hopes we could attend. J decided we couldn't. I was ready to do whatever he wanted. Instead I fell back asleep and woke up sunday to a call from the ER saying...... I had a blood infection and needed to come in for IV antibiotics. UGH. I thought about packing. I dressed comfortably. I did bring some of my jewelry making hobby toys to pass the time, but not enough, since like most reasonable prudent ER personnelle, they decided to admit me for a blood infection. So yes, I'm back in the hospital. My first culture from fri grew staph from my central line. The blood drawn peripherally yesterday (that's from my arm) also grew staph, making it much less likely something contaminated my culture. I'm now on vanco in the hospital, wishing I was home to perfect my presents, tree, make cookies, etc, but at leadt I had a few weeks to enjoy the season preparation as the should be. Much love to all, and please, for me, especially today, remember it's all the little things that make life worth living.

I wrote a post Friday.
Actually, to be more concise, my raging fever wrote a post Friday, and it put all sorts of angry hateful things in it that I knew could be hurtful.
I took it down quickly.
What happened was. . . .
I forgot to ask for handwitten narcotic scripts last time I sawmy heme team so I called two days later to have the scripts mailed.
Due to laws, narcotic prescriptions must have a handwritten signiture. It can't be faxed or from a computer. It must be signed sealed and delivered.
Well it wasn't and I was pissed.
I had to ration my pain control.
I wasn't taking the 60 mg of long acting morphine I usually take during the day.
I was taking regular morphine to cover it, and I was uncomofrtable.
I was a 4 or 5 on a scale of ten on the best week I've had in months due to a series of mistakes.
On Friday my body couldn't handle the stress anymore.
I started to feel chilled.
I starated to feeel whoozy and lightheaded.
I think it was around 6pm I started to spike a fever.
I grabbed some ice cold water and went to Lexi's first basketball game of the season. She's asked me herself to come, and there was  no way I was missing that.
I  lost count of how many points she scored, but their team won 26-4.
The rest of the girls on her team are huge too. I think they have a good season coming up if they can refine some basic moves and plays.
After that it was holiday gift buying extravaganzaa at Brynn's house and I wasn't about to miss that.
Not that I could afford to buy anything.
I'm strictly dedicated to making my own jewelry.
Pampered chef was there, as well as Mary K.
Brynn sells Mary K so if any body is ever looking for a representative let me hook you up with her.
Long story short, my temp spiked to 101 by 9pm and my mom and I took a drive to DHMC ER, where I got the full work up: pneumonia, septicemia, eti, etc etc.
AND FOR THE FIRST TIME EVER IN MY LIFE, my counts were good, nothing was showing up except some clear symptoms of a sinus infection and I was discharged home!!!!!!
I had oral antibiotics for my sinus infection and a plan to continue with the heme team on monday.
Well, now it's Sunday, and guess whose blood cultures have grown out some sort of unknown bacteria?
Yes, yours truly.
That's a twofer. I've never been discharged home from the ER and I have never had growth on a blood culture. I guess there is a first time for everything.
Thank goodness I'd been blessing myself with Holy Water all day. Say Prayers.