Pre-Easter Celebration

I knew it was going to be a good day when I woke up to two children squeling, “Did the Easter Bunny come? Where are the eggs? Did he hide the eggs and bring us baskets. …. With. . .. with . … CANDY! Wake up mom!”
They’re a day too early, but apparently, Easter is a big deal this year.
If you’re wondering where the second child has come from, we have Lexi for the weekend. She’s our niece. She’s been an active part of our family since Jon and I started dating when she was six months old. We take her to sports. We take her on vacations, and do our best to make sure she has all the opportunities Xander does.
We’ve missed her, but we had too many problems of our own to enjoy her on the weekends. Now, we have her back for Easter. It’s a special occasion.
There was some question today of whether or not the Easter Bunny was going to skip our house.
Jon decided to swing by Blockbuster as we were leaving “Hannah Montanna” and pick up a movie. He chose “Religulosity.”
He checked the cover. It looked funny.
He failed to realize that it was funny by picking on organized religion. He had decided to rent a movie making fun of religion on Easter weekend.
I couldn’t let that one go.
“Jon, what did you get?”
“It’s supposed to be funny, it looked funny.”
“Who told you this would be funny? It doesn’t look all that funny. Do you even know what it’s about?”
“It looked funny.” He said again.
“You rented a movie picking on religion over the Easter weekend. I don’t think that is going to make God very happy. It’s kind of blasphemy. Do you think Jesus would think this was funny?” I poked at him, playfully.
What I didn’t take into account in my joking was that there were two children listening to our conversation.
Out of the back seat I hear Alexis say, “You rented a movie that picks on Easter?”
“The Easter Bunny is going to skip over us.” Lexi accused.
Then, out of his Miley induced nap, we hear Xander chime in, “You offended the Easter Bunny?!”
Xander opens a sly eye to look at his father, “What if the Easter Bunny sees THAT?” he asks. “We should bring it back.”
Jon is officially surrounded and our point has been made. Movies picking on religion are not okay when we’re celebrating.
As far as Hannah Montana, it is definitely a father/daughter or uncle/niece bonding movie.
Lexi wants to buy it immediately.
Xander and I fell asleep during the show.
I have a problem falling asleep during movies. I have a problem falling asleep at Broadway plays too.
I like to go. I like to pretend to be cultured and upper class, but apparently theatre is not for me, since I’ve fallen asleep at Aida, Mary Poppins, Les Miserables, and RENT, twice.
Oops. The trend extends to movies also. If I ever need a nap, I just pop in a movie. It’s guaranteed to make me sleep.
I had hoped the weather would cooperate, and prior to Hannah Montana time, I could talk Lexi and Xander into some serious gardening.
They’re old enough to respond to incentive, such as payment. We have a lot of flower beds.
The weather didn’t cooperate though and instead decided to curse me with pain and diffuse muscle aches no matter how much I walked, danced, or stretched. I feel chilled to the bone with no hope of warmth. I ache all over. My eyes feel gritty and gross. My lips are chapped and taught permanently from GVHD.
Sometimes, when I swallow, I feel a stabbing in my throat. This is my dry, nonfunctioning salivary gland. It’s reminding me by painfully stopping my eating in its tracts that it’s dry.
I use eye drops for my eyes and incessant blistex to ease the pain of my lips.
I call myself “hot lips” to joke about the burning. Maybe if I find it funny, it won’t be so bad. Maybe if I can joke enough I can cope with the terrible things that are happening to my body.
Hopefully, eventually, I’m going to have to find some avenue to cope with these new onset chronic symptoms since they are life long.
I’m suffering, but I’m still trying to enjoy myself. I keep remembering Easter and the message that was meant to be sent to the world.
I think I get it.
Happy Holiday,

ACS Form Letter

April XX, 2009


Finance Committee
New Hampshire State Senate
State House, Room 302
107 North Main Street
Concord, NH 03301


Dear Chairman D’Allesandro and Members of the Senate Finance Committee,

(ON BEHALF OF INSERT NAME OF ORGANIZATION) I am writing to respectfully request that you fund the New Hampshire Cancer Plan by increasing the state cigarette tax by $1.00 and dedicate a nickel to the New Hampshire Cancer Plan. As an organization committed to improving the health of New Hampshire citizens, we strongly support the Cancer Plan.

(INSERT ADDITIONAL COMMENTS RELEVENT TO THE MISSION AND WORK OF YOUR ORGANIZATION). Cancer remains one of the greatest threats to the public welfare in New Hampshire, but we are fortunate enough to have the ability to defeat it. Studies show that every time a state significantly increases the cigarette tax, smoking rates in that state drop. Additionally, tobacco prevention programs, resources to help smokers quit, and cancer screenings are critical to stopping cancer before it starts, or catching it at an early stage where it is survivable and cost-effective to treat. This would allow some of our most vulnerable citizens access to cancer screenings and would help smokers who want to quit, among other programs.

Again, I urge you to provide funding for the Cancer Plan by increasing the cigarette tax. Thank you for your consideration of this important matter.

Sincerely,


YOUR NAME AND ADDRESS
YOUR ORGANIZATION

Go Ms. ACS Spokeswoman!

I took yesterday off from the computer! It was the first day in a long time I didn’t feel like writing. I wanted to spend as much time as I could in the real world over cyber space.
Come to find out, the real world is all it’s cracked up to be.
The real world includes cleaning and cooking, where as in cyber space, I apparently have a following. Who knew?
I met up with Linda on Weds. prior to my scan. She published one of my posts in her Hufington Post spot, and we’ve become friends. I met her solely over the internet. She’s evidence that cyber space is good.
She also let me know that I’m popular with some very eligible
lesbians.
I’m completely flattered that I am attractive to both sexes. Actually, I may be more flattered that women like me, since I do hold their opinion of beauty in a little higher regard than men.
I was never a girl magnet. That role was held for Heather growing up, but once I dawned my short hair, it was over.
I remember the first time I went to a club with my short do. I was getting flirted with by some fine men, but then by their fine female friends too.
I went to the bathroom looking for some peace only to get hit on while washing my hands.
This was a completely new experience for me, and to be honest, I was psyched.
I now have extended my romantic options to include men and women should I ever need to date.
This is a huge boost to the ego. It came exactly at the right time too.
Linda and I also discovered we have a mutual online friend. HELLO VALERIE.
Apparently, maybe, we have a whole huge online posse.
What I’m wishing for exactly is an online army that is ready to speak up for health care reform and provide new innovative ideas regarding how to make fighting diseases easier.
Maybe, if we all just put our minds together, we could find a solution.
Or maybe, if we all put our voices together, we would be heard.
Speaking of being heard, I will be speaking at the State House in NH on Weds. at 5pm on behalf of the American Cancer Society.
Apparently, the senators have told the ACS’ representatives that my testimony was influential in their decision to save the catastrophic illness insurance and the cancer initiative.
This is also a huge compliment, so I’m going back to speak somemore.
This was always the goal of my writing and endeavors. I wanted to bring attention to my disease and the suffering that comes along with it. I also wanted to change perceptions and stereotypes that cancer is a disease that happens to someone else.
I want to use my experiences to prove that barriers to care within the health care system are not limited to patients with no prior knowledge of health care or affecting patients with a limited or low income.
Cancer happens to young, talented, funny people in their young twenties just when they are launching careers. Barriers within health care are also met by the most educated and experienced patients with reasonable financial means of payment.
Diseases also do not only hit bad people who “deserve it.” Illness attacks indiscriminately with disregard to race, socioeconomic status, and life roles.
I’ve writing to make people aware of all the aspects a person meets when facing a disease. I was writing to gain attention to a subject that can no longer be ignored.
However, I’ve been writing with the goal that one day I would no longer be under the strict restrictions of my transplant. I’d been hoping that eventually I would be able to be a spokeswoman for The American Cancer Society and use my speeches to incite social change.
I am so excited the opportunity has happened all ready. It conveniently timed itself with my PET scan showing I probably do still have Hodgkin’s, but it will not be treated at this point. I have a couple months to work towards change.
I invite all of you to join me. If you would like more information regarding advocating and speaking opportunities with The American Cancer society in NH contact peter.ames@cancer.org or Katherine.klem@cancer.org.
IF you would like to attend the meeting on Weds., email me hill.stpierre@gmail.com, we can set up a carpool to Concord. The more voices being heard the better. Go Baldies!

Vic's Update

Happy EasterWell the Pet Scan is "Inconclusive" (?) The bright spots on her aorta and liver have not changed and there are now new bright spots under both arms and on her spleen--are these Graft vs. Host or cancer they don't know. All are to small for a needle biopsy. So the plan is to continue to see her every two weeks and do another Pet in 6-8 wks. Her liver numbers are improving and her skin Graft vs. Host rash is improving also. I'm not sure how long or how many pet scans we do before further treatment will be done being that the next treatment will be a leukocyte infusion from the donor. We're ok here. I asked Hillary how she felt about it and she told me it was what she expected that Xander has been praying for her to be healthy by Christmas and she feels that is when she will be better.

Test Day

I'm waiting in the bloom center. This is my favorite hiding spot. The library has always been a favorite spot of mine I feel like Belle from beauty and the beast finding solace comfort and understanding among the pages.
Now, I just want far away from the waiting room of overcrowded dana 1.
I woke up early but wasn't allowed breakfast or coffee because of my PET scan. The scan requires at least 6 hours of not eating prior or else the sugars metabolize and interfere with readings.
Then I took a xanax, which does not only functions to relax me but keeps the radioactive iodine from being metabolized by brown fat in my body giving a false positive cancer reading.
I got to the waiting room hungry tired and high. Not a good combination.
Add to this I'm a little more irritable than average from the anxiety of waiting for my test results and I don't even want to hang out with myself!
The library is my sanctuary. I left nuclear medicine hollering at the crew to tell my doctor only good news.
Something tells me the medical system doesn't work this way though. I can’t quite put my finger on it, but I think I'm getting the truth like it or not.
To try to offset the possible upcoming feelings of complete and utter devastation I dressed cute. For my retail therapy I bought skinny black dress pants. I'm wearing them hoping to feel as fabulous and vogue as I look. Check the pictures. Fabulosity is the word of the day.
I haven’t heard how voting went yesterday and whether or not sb158 passed. I also haven't heard how the town meeting with Sen. Hodes went. Hopefully that news will put me in a good mood if I get bad news.
Lexi is spending Saturday night and Easter morning with us. This will keep me happy. X is psyched for the Easter Bunny. He hides change in eggs instead of candy.
X is on a savings trip and has been scrounging money from everywhere. I did convince him to clean my car since there may have been coins hiding under the trash. It worked. I think I’ll employ this tactic again.
Xander does still plays the matching game with socks in the laundry.
Finally, after a decent wait time, I think everybody was trying to get squeezed in prior to the Easter Holiday, we were called into the exam room.
If I’ve ever seen a room that needs a make-over, I’d say it was the exam rooms. I’m not just talking at Dana Farber. I’m talking across the board, hospital to hospital, the exam rooms are bland and ugly.
Splash a little paint. Hang a print people! It’s proven to little the mood.
Just when mom and I had succumbed to watching videos on Utube in an attempt not to die of boredom Alyea walked in.
I knew he would be later than normal. On test days he likes to go to radiology and discuss the scan results. He likes to see the scan himself.
I’m certainly waiting to have a confirmed PET scan reading than a second hand preliminary reading from some radiologist I’ve never met.
The verdict: I still have hot spots.
It may be inflammation from the graft vs. host disease showing on the scan.
However, the hotspots in my liver and peri-aortic areas (around my heart) still exist. They have not grown.
There are additional hot spots in the spleen.
All these areas of suspicion are small. I believe less than one centimeter.
Even if it is Hodgkin’s, they do not pose an immediate risk.
There is a theory, one of the alpha goals for cancer therapy, to have cancer exist without disease.
Yes, I said it. I could have cancer, but not have any symptoms. I would be fine with that. The problem exists when tumors invade space, such as in the lungs, throat or heart, making it difficult to swallow, breathe, or sending you into cardiac arrest.
My nodes are small. There is enough space in my body for everybody right now as long is the tumors don’t go stealing blood supplies and diverting my energy for their use.
Then the cancer will get evicted.
Rushing for a T-Lymphocyte infusion, the next step in therapy, from the donor would be jumping the gun.
The donor’s system still needs time to work. Simone has not reached her maximum cancer killing efficacy.
I’ll get another scan in 8 weeks.
If these damn spots still exist (I’m channeling Shakespeare here, out damn spot, out I say), then I will have a needle biopsy done.
If this biopsy is positive for cancer, I’ll get a T-cell lymphocyte infusion from my stem cell donor.
I don’t know anything about these. I’ll research them sometime.
Ironically, Alyea was always using June as the alpha month.
“In June, you can go to NYC” or “In June, we’ll get a scan and see how everything works.” He was always saying.
Melissa thought this was just some arbitrary month he picked out of the air.
I was following him thinking there was some special reason that he kept talking about June.
Maybe he didn’t have some special, scientifically proven reason for waiting until June for further therapy, but that’s what he said and that’s the way it has worked out.
When June kept coming out of his mouth I did wonder the exact reason, and I suspected it couldn’t be really explained using science.
I was perfectly okay going with his gut instincts on this one. He’s the one that does transplants for a living and sees people like me day in and day out. If his gut instincts tell him we’re going to lay low until June, well I’ll be laying low until June.
Few people can verbalize their unconscious feelings and instincts, but that doesn’t mean they don’t exist. It certainly doesn’t mean there wrong. June it is.

On the upside, this does give me a two month reprieve to continue healing and exploring hobbies I enjoy. I'm talking to the American Cancer Society and some other health advocacy groups. You'll be seeing more of me.

Anxiety Insomnia

I’m awake. I’m up. I can’t sleep, even though I’ve taken my medication for anxiety.
The funny thing about ativan is that it is not effective if you take it when you are all ready anxious.
It needs to be taken in anticipation of being anxious.
I’m going to add THAT to the list of sick jokes.
If I popped a pill every time I thought I may be anxious, I’d just be one big human pez dispenser.
I did have a friend with an anxiety disorder. He recovered with therapy to the point he didn’t need his medication any more, but then he was anxious he might get anxious again. To relieve his anxiety about becoming anxious he hoarded his pills.
Ironic isn’t it? The circle of treatment goes round and round.
I keep lying in bed, well, in the pull out love seat I bought from IKEA to have at my sister-s house for nights like this not thinking about the test, but how I can explain my feeling towards it.
I’m optimistic. I have great hope I will be healed. I’m also realistic. I know the messages I’m receiving from my body. I don’t appreciate them. I don’t want be realistic to be confused with pessimism. I’m not curling up in a ball and waiting to die here.
Hope for the best, prepare for the worst is my motto.
My anxiety regarding the test is normal. Running possible scenarios, outcomes, and courses of actions through my head is normal also.
It’s anticipatory grieving. I’m mentally preparing myself for any possibility so when I’m face with the reality, the evidence, I will have semi-prepared myself in my head by running through the scenario hypothetically in my head.
Anticipatory grieving his a huge issue in the loved ones of life threatening diseases. However, I’ve never read anything about the anticipatory grieving of patients for what they may lose.
I have anticipated and grieved myself to death, literally. I’ve prepared myself for all possibilities. I’ve been preparing for years know. The grieving cycle has been completed, now I jump randomly between steps in the process, no longer able to make future plans beyond my next diagnostic test.
I’m living on a whim, making plans based on how I feel day by day. I guess I could call it being free spirited, but it doesn’t feel so free spirited when your body is forcing the behavior.
I’m a free spirited planner (is this an oxymoron?). I like to have events and plans to lok forward to. My disease has robbed me of this. I have had too many disappointments to really look forward to the future with excitement and anticipation anymore.
What I do know is that no matter the outcome tomorrow I have plans and hope still. I’m intricately tied to life. I have the fighting spirit.
Xander has been asking God every night for me to be healthy for Christmas. I think this is a great timeline. I know this can happen.
Life works in mysterious ways. Events occur on their own timeline. At the very least, I am fortunate to have the reassurance that my suffering and experiences are not in vain. There is a purpose to this.

I am beginning to believe I'm affecting more than I'll ever know, positively. This is a great gift to me. Knowing I may inspire someone else, knowing sharing my experience may make someone elses battle easier makes the pain worth while.

There is a purpose for everything, eventually, I’m going to understand it. Right now, I'm going back to bed.

Quickie

Today went well. I've worn myself out having fun: going to therapy, indulging in retail therapy, and meeting up with fellow on-line writing pioneer Linda of the Huffington Post. I'll post the big news tomorrow! Tonight Heather and I are having a slumber party at her house, eating Haitian food, and watching movies. I've only been enjoying the great things in life today.

Dr. Dana The Eye Guy

First appointment for my week of testing went well!
I’m hoping this is a trend for the week.

Look at the picture of one of my eye tests. Some 26 year old women go to the spa, get their make-up done, and fake eye lashes put on.

I go to the ophamalagist and get this funky test which I think is to measure how quickly my eyes wet themselves.

This is not a style I predict you'll be seeing in Vogue for the fall fashion season.

At least the art was fabulous.

Somehow, the hospitals in Boston are all adorned with beautiful, or at least appreciable, works of art.
Everyone at Mass. Eye and Ear were very friendly.
I didn’t expect anything less, but some large, prominent hospitals do not understand that every employee contributes to an environment, or what I like to say in psyche speak the “healing milieu.”
I really dislike being met by somebody with a negative attitude behind any desk when I am desperately trying to look on the Brightside.
I also have trouble seeing what can be so much more difficult about their life than mine.
Clearly, I’m encountering them in a hospital. I’m not there because everything is wonderful in Hillville.
What I love is when everyone I meet has a pleasant demeanor. Everything seems to go more smoothly.
Today did go smoothly, from checking into to intake testing, then questions from the fellow to meeting Dr. Dana. I enjoyed everybody very much.
My eyes are dry.
Plan and simple. I had my lacrimal ducts plugged to keep the moisture I do have in my eyes from draining.
I liken this to a damn. The resevior is my eyes. The damn contains the water for use.
The plugs keep moisture in my eyes to prevent problems such as the severe pain I am experiencing.
Hopefully I can go back to things I enjoy, such as reading and playing on my computer.
I am feeling better all ready. I’m looking at the screen. All smiles here. Thank you Dr. Dana and Staff.
I received more eye drops. The restasis I am using takes 3 months for full effect. I’m using drops until then. I also have the option of plugging an additional duct. There are two in the eyes. I have plugged one.
It’s always good to have options.

I brought home Depereaux for Xander. It's the story of a very brave mouse who did not fear knives or humans! I think this story is perfect to prepare for the rest of the week. We're going to watch it together tonight.

Tomorrow I'm off early for an appointment with my all-star psychiatrist. Then I'm off with Heather, my twin sister, for a girl's afternoon of retail therapy (with Pierce of course).

Then it's the big day on Thursday! I'll keep you posted.