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."
Saturday, April 30, 2011
I've been so excited. I haven't wanted to write and jinx the good times. I never thought I'dmake it to NY to do the family trip I always wanted. I forgot how inspired I am by the city and all the possibilities it holds. Driving in I feel like a world of opportunity is opening up, maybe like the imigrants on Ellis felt. It's amazing to see the awe struck look on X's face as we surprise him with new experiences from the empire state building to toys r us. Things so large he'd ever imagined them. I can see his world getting larger. I'm so blessed I'm here to see it and join in!
Thursday, April 28, 2011
Relay For Life Meeting
It's Time for The Mighty White Tigers Relay For Life Team to Roar!
Our first official meeting, a family night out at Time Out to meet, eat, play and do good (it's family friendly with arcades for the kids, folks) to discuss fundraising, organize relay day, and delegate tasks is taking place:
Friday May 6th 2011
5:30 pm
At Time Out Sports Bar and Grille
101 Mulberry St.; Claremont, NH
Our First Tentative Event is a
Summer Kick-off Day
with a
Backyard Volley Ball Tournament,
Yard Sale, and Craft Fair
May 21, 2011 starting 9 am
at Patch Park in Charlestown, NH
Families and Children are encouraged to join our team!
Alexis and Xander are co-chairing with us, and as they say, "The Relay is For Kids!"
What kid does not want to stay up most the night to run around a track to music and sleep in a tent in between?
Summer Kick Off Day is not official yet, but....
Keep the day clear and start getting your teams together!
Six people with min. of one of each gender
on the court at a time
Check out the facebook event
So Excited!
I'm excited.
I don't know if it's going to come through in my posting, because I am definitely containing my excitement.
I don't want to jinx it.
Every time for the past five years that I have wanted to do something, that I have made plans, that I have been truly excited, the event gets canceled, or better yet, cancered.
I hate disappointment. It's one of the world's worst emotions, and emotionally, it's where I live.
Disappointmentville.
But not today, and hopefully not this weekend, we have family plans to go to NYC and I'm excited!! It's supposed to be gorgeous.
Ever since X was born, I have always wanted to travel to New York with Jon and Xander.
But Traveling back to the city was something I thought I would never be able to do again at one point.
I didn't have the lung capacity or the muscular strength to walk from the hotel door to the room.
Getting out again would be even more difficult, but not now, not today, not this moment.
I've been slowly working out, working up my tolerance.
I've rested up this week in anticipation.
I've gone back to my anal retentive travel planner ways and have made a little itinerary of possibilities.
We leave at 4pm this afternoon.
I've scheduled an appointment with a chinese practitioner, Dr. Wong, who I hope is so right, at the recommendation of Dr. Ralph Moss for 8:30 pm tonight.
That's almost immediately upon arrival. At first it'd been scheduled for 10pm.
I hope he can add food or supplements to my regimen that will support the healthy growth of my immune system and my overall health.
I do have to proceed with caution whenever adding anything to my body. I am so sensitive to everything.
I am getting the medications to retry a complementary regimen I did in the spring/summer of 2008.
During this period I was taking a treatment holiday, searching for second opinions, and deciding where to proceed (Dana Farber or Memorial Sloan and Kettering) for my second transplant, an allogenic transplant from an unrelated donor.
I decided I had nothing to lose and purchased a regimen recommended by a naturopath in NYC that had come from Germany. Nothing was explained to me how it would work. I did some research myself, but couldn't find much.
I took it anyway only to discover that between PET scans, with out any other intervention, my tumor had markedly shrunk.
It's time to repeat that regimen.
I'm getting a PET scan May 4th to address the effectiveness of the bendomycine and then a meeting with my heme team on the 9th, or maybe I have that backwards, who knows.
After that I'll begin to introduce The C Regimen. That's what I'll call it.
NYC will not be all work and no fun. It won't be all health.
We're going up the Empire State Building using the friends and family elevator! We get to cut the line! Then we'll make it to the restaurant MARS2112 where X is excited to meet some aliens and ask them questions. First, he wants to know how they pee. Then he asked me if he could tackle them.
I'm definitely raising a boy.
Saturday we're going to see a Yankees game, hoping to go early for batting practice. This will be X's first major league game, and I get to be there!
Hopefully afterwards I'll be able to see some friends from college, but I'm trying to keep it low key even though there are a thousand things I could try to squeeze in.
I'm just so excited.
I don't know if it's going to come through in my posting, because I am definitely containing my excitement.
I don't want to jinx it.
Every time for the past five years that I have wanted to do something, that I have made plans, that I have been truly excited, the event gets canceled, or better yet, cancered.
I hate disappointment. It's one of the world's worst emotions, and emotionally, it's where I live.
Disappointmentville.
But not today, and hopefully not this weekend, we have family plans to go to NYC and I'm excited!! It's supposed to be gorgeous.
Ever since X was born, I have always wanted to travel to New York with Jon and Xander.
But Traveling back to the city was something I thought I would never be able to do again at one point.
I didn't have the lung capacity or the muscular strength to walk from the hotel door to the room.
Getting out again would be even more difficult, but not now, not today, not this moment.
I've been slowly working out, working up my tolerance.
I've rested up this week in anticipation.
I've gone back to my anal retentive travel planner ways and have made a little itinerary of possibilities.
We leave at 4pm this afternoon.
I've scheduled an appointment with a chinese practitioner, Dr. Wong, who I hope is so right, at the recommendation of Dr. Ralph Moss for 8:30 pm tonight.
That's almost immediately upon arrival. At first it'd been scheduled for 10pm.
I hope he can add food or supplements to my regimen that will support the healthy growth of my immune system and my overall health.
I do have to proceed with caution whenever adding anything to my body. I am so sensitive to everything.
I am getting the medications to retry a complementary regimen I did in the spring/summer of 2008.
During this period I was taking a treatment holiday, searching for second opinions, and deciding where to proceed (Dana Farber or Memorial Sloan and Kettering) for my second transplant, an allogenic transplant from an unrelated donor.
I decided I had nothing to lose and purchased a regimen recommended by a naturopath in NYC that had come from Germany. Nothing was explained to me how it would work. I did some research myself, but couldn't find much.
I took it anyway only to discover that between PET scans, with out any other intervention, my tumor had markedly shrunk.
It's time to repeat that regimen.
I'm getting a PET scan May 4th to address the effectiveness of the bendomycine and then a meeting with my heme team on the 9th, or maybe I have that backwards, who knows.
After that I'll begin to introduce The C Regimen. That's what I'll call it.
NYC will not be all work and no fun. It won't be all health.
We're going up the Empire State Building using the friends and family elevator! We get to cut the line! Then we'll make it to the restaurant MARS2112 where X is excited to meet some aliens and ask them questions. First, he wants to know how they pee. Then he asked me if he could tackle them.
I'm definitely raising a boy.
Saturday we're going to see a Yankees game, hoping to go early for batting practice. This will be X's first major league game, and I get to be there!
Hopefully afterwards I'll be able to see some friends from college, but I'm trying to keep it low key even though there are a thousand things I could try to squeeze in.
I'm just so excited.
Wednesday, April 27, 2011
Illness Etiquette: How to React to Shocking News
The first time someone uttered the words, "You still have hope" in response to my cancer reoccurrence I almost slapped them.
In Hodgkins, the first round ABVD therapy cures 75 percent of Hodgers but had failed me. I was preparing for a routine syngeneic stem cell transplant with no other complications to cure the disease when an RN in the infusion clinic said these words, obviously meant to comfort me.
Well, it didn't.
The sentence sounded scripted from a manual on how to empathize but not sympathize (something taught in nursing school), and Hodgkin's is 90 percent curable.
"There is always hope!" I scoffed silently. My mind screamed at the two women hovering over me, obviously uncomfortable and inexperienced in addressing relapses in young patients.
"There is more than hope! There are treatments, like a BMT or radiation! What the hell do you mean there is always hope!".
I didn't say anything. I just nodded and waited patiently for them to leave instead of booting their asses across the floor for being so clueless about addressing complications.
But their mistake isn't unique. With cancer becoming more prevalent, people living longer and healthier, we are now venturing into society more, encountering acquiantances in social situations.
Miss manners has never addressed how to handle the news someone you barely know has a life threatening disease with etiquette in five minutes. There is just no precedent on the social savior faire for this situation, and I have even better examples of flubs.
Once when J told a co-worker about me being treated in a similar manner as Farrah Fawcette, the oblivious man stated, "you know she's going to die, right?".
Ok.... And how do you react to the reading between those lines?
I even had one woman stammer, "oh, congratulations!" After I told her I had cancer and handed her the card for my blog.
She reacted to my cancer like it was a job to be aspired to, which essentially I was pretending it was, but what is the "right" way to address this news?
First, there is no one right way.
Every person is different. They have different personalities, different diagnosis and coping methods. That doesn't mean some cookie cutter responses won't work.
If you're shocked, pause, take a second and think about what you say. This is good advice for any awkward situation. A stunned, "I'm so sorry" is safe and pushes the conversation back to the patient.
Then I like honesty. If you have questions, ask, but keep it to a few specific inquiries. Do not barrage the person with questions, especially if you're not close. This looks like a tacky attempt at getting first hand gossip. It's pretty easy to tell if you're asking out of concern or their own bored curiosity. Don't be that person. It adds to the hurt knowing others are discussing your "problem."
However, If you're uncomfortable and don't want to talk about it, say so. Be honest.
If you have or had a loved one with cancer, say so, but do not launch into a long story about your horrible experience. That is a big no no.
Try to find the positive. Leave out that uncle pete suffered and died of the same disease. Say he had great doctors in Cleveland.
Making a joke is an iffy tactic. It could go any way. This response is one that needs to be gauged based on your personnal relationship.
If you want to offer assistance, Only offer help if you're truly willing. It helps to be specific about what you'll do too and take the initiative to make contact or get their information. Then call and make the gesture. If they don't call you, you haven't been forgotten, you've been lost in the stress.
Offers for Well wishing, thoughts and prayers are almost always welcome and a good way to wrap up a conversation. Asking the patient to "Keep me updated" or "in the loop" may cause more stress for them. Instead ask how you can keep tabs on them, maybe they have a close friend assigned to updates, a blog or an email list.
Finally, understand you're talking about a very sensitive subject and the person's reaction may have nothing to do with you or anything you said.
Once, a couple years into my disease, I ran into a past best friend, who I hadn't seen in years, while getting my retail therapy after being drugged for a test and getting bad news. We ran up and hugged each other but as soon as she said, "I'm so sorry.." Or "I've heard how horrible it's been.." I burst into heaving sobs and crumpled in her arms.
Oops, and that's the reaction you may get if the subject is brought up too soon or at the wrong time.
I could have just as well exploded anxiously saying, "I can't handle it! I don't want to talk!" Don't take it personnally. It has nothing to do with you.
Even with this advice, you may still have a foot in your mouth moment, don't beat yourself up. Both sides are in the sensitive conversation together. We sick know you mean well and meant what was best for us. Words just don't always come easily when emotions run high, but we're probably all ready off, forgetting or not noticing the error in manners, planning our survival.
Tuesday, April 26, 2011
I know "I shall not want."
I thought I'd gotten past being sad about sacrificing, not having, worldly goods. All my money goes to treatment. Everything else goes to food and my family.
When we do have some funds and my health, my priorities are family experiences.
We are going to NYC this weekend. Who could pass up free transportation, free hotel at the grand hyatt, half price empire state building tour. NYC is like visiting home for me.
But dammit, I've wanted a patio set so badly for so long.
I found one I like at KMart on sale this week for $180. It matches my imaginary decor. I want a place to curl up and rest while I watch the kids play.
Last year, I couldn't even move down to our backyard. I couldn't breathe to conquer the hill.
I should be happy and satisfied with my health, but maybe, just maybe, somehow I'll get what I want this year. I feel guilty for even wanting it. I've given more than a little hint to my husband about making it a mom's day gift.
Last year, I was told we "could just buy it" about a patio set. Then I was told it "would be my mom's day present." Then, nothing.
Maybe, just maybe, I'll get it this year.
Or maybe, just maybe, I'll wait another five.
I thought I'd gotten past being sad about sacrificing, not having, worldly goods. All my money goes to treatment. Everything else goes to food and my family.
When we do have some funds and my health, my priorities are family experiences.
We are going to NYC this weekend. Who could pass up free transportation, free hotel at the grand hyatt, half price empire state building tour. NYC is like visiting home for me.
But dammit, I've wanted a patio set so badly for so long.
I found one I like at KMart on sale this week for $180. It matches my imaginary decor. I want a place to curl up and rest while I watch the kids play.
Last year, I couldn't even move down to our backyard. I couldn't breathe to conquer the hill.
I should be happy and satisfied with my health, but maybe, just maybe, somehow I'll get what I want this year. I feel guilty for even wanting it. I've given more than a little hint to my husband about making it a mom's day gift.
Last year, I was told we "could just buy it" about a patio set. Then I was told it "would be my mom's day present." Then, nothing.
Maybe, just maybe, I'll get it this year.
Or maybe, just maybe, I'll wait another five.
The Best Things in Life Are Free
When I started seeing blood when I peed a week ago Thursday I freaked out on many different levels. Obviously, I was concerned for my health, where the bleed was coming from and why it was happening and what would happen if it continued on, but I was also extremely emotional disturbed.
Who wants to have blood coming out of those personal parts for no rhyme or reason? Not me. It's incredibly unnerving.
What do you do when you've been sick for FOREVER and you have a scary symptom that could threaten you? You advocate for your health. You get an idea in your head of what you want and then you call whoever you can to get what you need.
Well, that process took over a week. I kept getting the same response, "Don't worry about it unless it clots or you have trouble urinating, then go to the ER."
No, that answer didn't uell my fears. I don't want to wait until I have an emergency if I don't have to. I've had my ability to urinate blocked by clots before in Dec. 2006, and it was very scary. I don't want a repeat.
Finally, on Friday and with the amount of blood increasing, I was given the name of the urologist who placed my stent, a man I had never met since I was sedated, and promised an urgent appointment this week.
I relaxed a little.
But Sat. came, I was exhausted, the bleeding was increasing, I hurt like hell, and whatever security I felt from the day before had left me. I decided to call the urologist on call to get his opinion on the issue.
Not once during the entire week had I talked to or even had the offer or option of speaking to a Doctor. Nurse Practitioner or nurse that specialized in urology or knew about stents. It was long past time to talk to someone in he know.
Sat. morning I finally called and asked for the urologist on call.
I spoke with a very nice, well informed Dr. Deiter, who I have no idea if he is a resident, fellow, or attending, but it doesn't matter, because he was the perfect man for me.
When I said my name and began to introduce my health history he stated he was, "very familiar with my case," which immediately creeped me out.
I was told Fri. I do have a urologist, one that likely came into the procedure room while I was unaware and snuck before I came to. Maybe this Doc was with him.
Who knows? But it was also reassuring he knew me.
I told him my complaints and he quickly began reassuring me. He made statements like, "bleeding with a stent is completely normal" and "stents are commonly painful. They are not a comfortable addition."
He also stated that, "Blood in a toilet is like food coloring in water, it looks a lot worse than it may be."
And finally, what no one had told me, but what needed to be said that I so desperately needed to hear:
"There is nothing that can be done for minor bleeding with a stent besides stopping your lovenox."
Stopping my lovenox, my blood thinner, is not an option due to the possibility I'll create clots going to my lungs or brain causing pulmonary embolisms or a stroke.
"All we can do is watch the symptoms and gauge whether you need a transfusion for blood loss."
That's it! That could have been said to me on Monday, or maybe, even a week and a half before when the problem started!
All I needed was a little reassurance that the blood, coming from a very personal area I like to take care of, and the increased pain was normal and expected.
I needed reassurance! I needed five minutes of someone's time to tell me the truth and what to look out for. I've been in many situations before where there is nothing that can be done other than watch for symptoms and be transfused if necessary.
That's not scary. The unknown is scary, and that's where I was left. Now I am informed, relaxed, and that reassurance was free.
Thank you Dr. Deiter, but elsewhere, about freakin' time.
This did get me thinking about all the free things in life we should be grateful for. Here is a personal list:
Who wants to have blood coming out of those personal parts for no rhyme or reason? Not me. It's incredibly unnerving.
What do you do when you've been sick for FOREVER and you have a scary symptom that could threaten you? You advocate for your health. You get an idea in your head of what you want and then you call whoever you can to get what you need.
Well, that process took over a week. I kept getting the same response, "Don't worry about it unless it clots or you have trouble urinating, then go to the ER."
No, that answer didn't uell my fears. I don't want to wait until I have an emergency if I don't have to. I've had my ability to urinate blocked by clots before in Dec. 2006, and it was very scary. I don't want a repeat.
Finally, on Friday and with the amount of blood increasing, I was given the name of the urologist who placed my stent, a man I had never met since I was sedated, and promised an urgent appointment this week.
I relaxed a little.
But Sat. came, I was exhausted, the bleeding was increasing, I hurt like hell, and whatever security I felt from the day before had left me. I decided to call the urologist on call to get his opinion on the issue.
Not once during the entire week had I talked to or even had the offer or option of speaking to a Doctor. Nurse Practitioner or nurse that specialized in urology or knew about stents. It was long past time to talk to someone in he know.
Sat. morning I finally called and asked for the urologist on call.
I spoke with a very nice, well informed Dr. Deiter, who I have no idea if he is a resident, fellow, or attending, but it doesn't matter, because he was the perfect man for me.
When I said my name and began to introduce my health history he stated he was, "very familiar with my case," which immediately creeped me out.
I was told Fri. I do have a urologist, one that likely came into the procedure room while I was unaware and snuck before I came to. Maybe this Doc was with him.
Who knows? But it was also reassuring he knew me.
I told him my complaints and he quickly began reassuring me. He made statements like, "bleeding with a stent is completely normal" and "stents are commonly painful. They are not a comfortable addition."
He also stated that, "Blood in a toilet is like food coloring in water, it looks a lot worse than it may be."
And finally, what no one had told me, but what needed to be said that I so desperately needed to hear:
"There is nothing that can be done for minor bleeding with a stent besides stopping your lovenox."
Stopping my lovenox, my blood thinner, is not an option due to the possibility I'll create clots going to my lungs or brain causing pulmonary embolisms or a stroke.
"All we can do is watch the symptoms and gauge whether you need a transfusion for blood loss."
That's it! That could have been said to me on Monday, or maybe, even a week and a half before when the problem started!
All I needed was a little reassurance that the blood, coming from a very personal area I like to take care of, and the increased pain was normal and expected.
I needed reassurance! I needed five minutes of someone's time to tell me the truth and what to look out for. I've been in many situations before where there is nothing that can be done other than watch for symptoms and be transfused if necessary.
That's not scary. The unknown is scary, and that's where I was left. Now I am informed, relaxed, and that reassurance was free.
Thank you Dr. Deiter, but elsewhere, about freakin' time.
This did get me thinking about all the free things in life we should be grateful for. Here is a personal list:
Family hugs. Chasing butterflies. Catching fireflies. Having a baby smile at you. The sound of laughter. Laughing yourself to tears. Hearing "I love you." Feeling loved. Having faith. Knowing you've made someone happy. The smell of spring. Lazy sundays. Naps. Splashing in puddles. Child-like innocence and honesty. True love. Learning. Serving others. Working towards your purpose. Knowing who you are. Strength of conviction. Knowing right from wrong. Forgetting preconceived notions. Humility. Lacking judgements. True friends. FAMILY. Traditions. Exploring your surroundings. Curiosity. Hearing from a past friend. Succeeding.
Monday, April 25, 2011
Vote For More Smoking Teenagers!
NH is about to make a silly, costly mistake.
Our representatives in NH want to get rid of the 10 cent cigarette tax.
This crazy tax is giving us a surplus of $14.8 million each year (According to The American Cancer Society) that we don't know exactly what to do with, so clearly we need to get rid of it, and not put it away for a rainy day, use it to fund health promotion or substance abuse programs.
Along with getting rid of that 14.8 million dollar surplus, by cutting the tax our teenagers will begin smoking again since there is a clear correlation between rising costs of cigarettes and lower rates of teen smoking, but having nonsmoking teenagers, well, that's just plan old un-American.
Up in Smoke |
Supporters of the tax removal say that doing this will increase interstate commerce, making our border neighbors run from Mass. and Vermont to us for the 10 cent deal.
Thank you, VT. They've all ready taken care of this problem for us. They've raised their cigarette tax $0.85 without a blink of an eye.
NH's 10 cents is still a steal.
As for Mass. residents, well, They can keep crossing our borders for our barely taxed liquor at the stores strategic placed on our interstates.
Silly NH representatives, we have cheap liquor to improve inter-state commerce and a possible repeal of the gas tax for the summer to to increase tourism.
Interstate Politics shows us we could raise our tax another 65 cents and still be ten cents lower than the competition.
Why not keep the money and the non-smoking teenagers and work with what we do have to increase revenue?
Oh yeah, and in Vermont, 8 out of ten teens don't smoke.
NH State Senate will be holding a vote on this bill Weds. April 27, 2011. For more information contact Mike Rollo at The American Cancer Society (eileen.silvestri@cancer.org)
Can't join but want to help?
Please email your Senator and urge him/her to protect the youth of New Hampshire from the ravages of tobacco by voting NO on House Bill 156.
Saturday, April 23, 2011
Never thought you'd see me do this again. . .
I never thought you'd see me doing this again, but here it is.
I'm not sure the quality of the video, but I wanted to get the evidence, the accomplishment, out to the world. I'm jumping on the trampoline with X!!
I'm not sure the quality of the video, but I wanted to get the evidence, the accomplishment, out to the world. I'm jumping on the trampoline with X!!
Friday, April 22, 2011
Happy Good Friday!
And it is a GOOD Friday, not just "a religious holiday observed primarily by Christians commemorating the crucifixion of Jesus Christ and his death at Calvary." Thank you wikipedia.
No, it's a good day.
I feel ok, even after a week of vacation with X. We've had a tumultous week. Lots of fun including him shopping with his birthday money mon., playing outside together Tuesday and going to the Competitive Complex in Canaan yesterday.
But this was also peppered with therapy, where it's advised to get bad emotions out. Unfortunately, once the can of worms is opened it's not sealed shut after the hour. X has been emotional seeing I'm now well and he can vent is anger. And he does.
One therapist told me he has an overall severe adverse reaction to loss due to all he has lost through his life, he is constantly grieving.
This makes punishment miserable when it includes taking something away, the LOSS of a privilege, and he did lose privileges for his outburst yesterday. Thank goodness for Jon's support who came home from work. We all worked it out together after what may have been hours of screaming and crying after a great day.
He is clearly anxious and depressed. This week I'm almost ready to medicate him for depression.
No antidepressant prescription has been tested and approved for use under the age of 18. I'm open and up for any suggestions. Please help.
So today is better.
Here is something I stumbled upon to keep us motivated:
Belief in success is the one basic, absolutely essential ingredient in successful people.”
Believing something can be done sets the mind in motion to find a way to do it.
“Believe it can be done. When you believe something can be done, really believe, your mind will find the ways to do it. Believing a solution paves the way to solution.
all quotes by David J Schwart
And it is a GOOD Friday, not just "a religious holiday observed primarily by Christians commemorating the crucifixion of Jesus Christ and his death at Calvary." Thank you wikipedia.
No, it's a good day.
I feel ok, even after a week of vacation with X. We've had a tumultous week. Lots of fun including him shopping with his birthday money mon., playing outside together Tuesday and going to the Competitive Complex in Canaan yesterday.
But this was also peppered with therapy, where it's advised to get bad emotions out. Unfortunately, once the can of worms is opened it's not sealed shut after the hour. X has been emotional seeing I'm now well and he can vent is anger. And he does.
One therapist told me he has an overall severe adverse reaction to loss due to all he has lost through his life, he is constantly grieving.
This makes punishment miserable when it includes taking something away, the LOSS of a privilege, and he did lose privileges for his outburst yesterday. Thank goodness for Jon's support who came home from work. We all worked it out together after what may have been hours of screaming and crying after a great day.
He is clearly anxious and depressed. This week I'm almost ready to medicate him for depression.
No antidepressant prescription has been tested and approved for use under the age of 18. I'm open and up for any suggestions. Please help.
So today is better.
Here is something I stumbled upon to keep us motivated:
Believing something can be done sets the mind in motion to find a way to do it.
“Believe it can be done. When you believe something can be done, really believe, your mind will find the ways to do it. Believing a solution paves the way to solution.
all quotes by David J Schwart
My Thoughts & Priorities During Crisis
I started to write out all my stressors hoping to help people understand the way I think, the way other sick parents probably do, but now I'm just stressed about finishing this. It was started almost a month ago I think. Here are the goods:
With my feet finally under me, I'm processing in my mind my priorities and I'm ready to put them on paper.
I've always wondered what, exactly, other people think and stress about.
I think people misconstrue what I worry about. The mind of a seriously ill twenty-something is a new concept with little research and less written.
I wonder if my worries seem insignificant to others in regard to what were experiencing, but what I've found is life marches on. I have my health stresses, but I also have my lief stresses that any other wife, mother, woman can relate to.
1. Get Healthy, regain energy
2. Keep X and J happy by being active, scheduling playdates, birthday parties, going to movies, picking up the house, keeping it organized, controlling spending, bringing in some extra money, organizing the schedule.
So in the midst of having my kidneys fail, recovering from chemo, and having a massive allergic reaction this is what I've been concerned about:
Of course, there is my health. This is a constant worry with all my treatments.
I'm wondering, do I have all the medications I need? How am I going to get my medications? Do I have any appointments? How am I going to get to my appointments? When I'm at my appointments who is going to take care of x? how is he getting to school? From school? Who is taking care of him after school? And whoever helps me with all these situations, how am I going to repay them? What can I do so we have a quid pro quo relationship? Who do I need to call and what do I need to do to get all these things in order, when am I going to have the time, the energy, and the health to do them and how am I going to remember to tell everybody else involved whether or not I have it under control? And how much do I owe them?
Finding rides to the frequent appointments is the worst. With me unable to drive and the long distance, I understand I am asking for a substantial time commitment. I am so lucky I have a large group of family and friends who understand this.
Sometimes, we work it out so I am dropped off at the hospital by one person and another picks me up.
Other times, I alter my treatment and accept what I can receive locally at The Kane Center in Claremont, such as IV hydration or neupogen injections, which I can get to myself.
But with my reliance on others comes a substantial amount of guilt. People are sacrificing there time for me, and I have little to offer in return.
But I still try.
I offer to use my car for the trip, pay for gas, buy breakfast/lunch, etc., design jewelry, even babysit. If someone says they "like" something I own, it usually shows up as a present to them in some way or another.
I don't want any relationship to be one-sided.
I've been deeply hurt before by people who rejected my offers for payment, job assistance, or goods in return for their help, and then told other's I greedily took from them, offering nothing in return for their kind deeds.
But I know all of these things, these offerings, are not needs or necessities. I just pray and hope my loved ones won't come to resent the help I need. I try to be fun and amusing company, even at my worst, at my sickest.
Organizing life is the hardest, and These worries are with me always.
But right alongside, barely close behind is the worry for my family, specifically my immediate family Jon and Xander- Are they happy? Is X distracted? Does he have sufficient play dates, sports, outings, events to cope with his stress. IF he doesn't, I arrange them. I also cook him comfort food. So while I'm sick, I'm still playing super mom making cookies, planning play dates and birthday parties.
X's happiness goes hand in hand with Jon's. How is Jon coping? Is he angry? Has he become snappy. Is the house clean enough for him? What do I have to do to make his home coming as easy and happy as possible? I try to organize the house and pick up to his liking. I try to have X behaving by having him run outside or do any other physical activity. What will he want for dinner? Is it out and ready to be cooked?
Jon does the cooking, on the rare occasion I can, I try. I at least attempt to plan the meals so he doesn't have to stress over that.
Then, with adult relationships, do we have enough money in the accounts? Has anything been bought that he'll be unhappy about? Has there been a change in schedule he needs to know about or something I've forgotten to tell him?
Basically, I do everything I can to make and keep him happy if I'm able.
This doesn't mean I don't have bad days where I snap, get pissy, and we fight. I just never want that to happen.
My immediate Family doesn't stop with Jon and Xander though. I worry deeply about my parents, how their feeling, how their coping, and are their needs being met? Am I monopolizing too much of their time and possibly handicapping them financially? What can I do to give back for all the good they've done for me. I know i wouldn't have survived so long without them. They are my rock. The ones I can call anytime and know they'll rescue me.
How do you repay that?
Well, I know I don't have to, but I want to. I also have always loved to work with my Dad. Through out my illness I've tried to keep up with assisting the family business, Five Eagles Design, LLC.
So pay back and contributing to my immediate family includes trying to bring in extra income through donations or assisting in projects.
Jon I try to put in charge of repaying his parent's for their help. It just makes more sense, but when you get to the knitty gritty, I'm stressed about finances.
I'm always stressed about money. I didn't think I have a life threatening disease and would constantly worry about funds and come up with side businesses or way to increase donations, but that's the world we live in.
This stress is enough.
Then there is the worry of the purity of my soul.
Finally, my disease process is a concern, but unfortunately, researching, intellectualizing, thinking new theories and acquiring new treatment regimens is only possible when I have all my basic needs met.
I have to overcome everything listed before this before I can research alternatives or even alter my lifestyle for a better diet.
Money is the huge, insurmountable issue that paralyzes me in trying, not only innovative complementary therapies, but maintaining a healthy, anti-inflammatory, anti-cancer diet.
Food is expensive!
I look to herbs mostly in food now. They are expensive upfront, but only need to be purchased once every couple of months. Parsley ad tumeric are two of my favorite cancer fighting herbs.
Thanks to all your support through the purchase of my jewelry and some donations, I have been able to reach out to some alternative practitioners.
I did consult Dr. Moss @ $800 for his publication and phone consult, which only lead to referrals unfortunately.
I'm still taking my kineret, the cure for GVHD of the eye at $150 every 3 weeks.
I am meeting next Thurs. evening with a Dr. George Wong, a Chinese herbalist, while traveling to NYC for a fee of $350. This does not include his recommendations. I have always wanted from day one to delve into Chinese medicine. I dabbled in it during college, roaming the apothecaries in Chinatown sometimes with a Chinese friend who could/would decipher the labels.
I'm purchasing a past regimen that I took with success in the summer of 2008, a treatment that regressed my tumors, while I'm in NY as well for a likely cost of $150-200. I'm purchasing two of the regimens so double the cost, $300-400.
Hopefully this gives you an idea of where your money is going when you support us.
And now, I have to go, just writing this is stressing me out.
I have to overcome everything listed before this before I can research alternatives or even alter my lifestyle for a better diet.
Money is the huge, insurmountable issue that paralyzes me in trying, not only innovative complementary therapies, but maintaining a healthy, anti-inflammatory, anti-cancer diet.
Food is expensive!
I look to herbs mostly in food now. They are expensive upfront, but only need to be purchased once every couple of months. Parsley ad tumeric are two of my favorite cancer fighting herbs.
Thanks to all your support through the purchase of my jewelry and some donations, I have been able to reach out to some alternative practitioners.
I did consult Dr. Moss @ $800 for his publication and phone consult, which only lead to referrals unfortunately.
I'm still taking my kineret, the cure for GVHD of the eye at $150 every 3 weeks.
I am meeting next Thurs. evening with a Dr. George Wong, a Chinese herbalist, while traveling to NYC for a fee of $350. This does not include his recommendations. I have always wanted from day one to delve into Chinese medicine. I dabbled in it during college, roaming the apothecaries in Chinatown sometimes with a Chinese friend who could/would decipher the labels.
I'm purchasing a past regimen that I took with success in the summer of 2008, a treatment that regressed my tumors, while I'm in NY as well for a likely cost of $150-200. I'm purchasing two of the regimens so double the cost, $300-400.
Hopefully this gives you an idea of where your money is going when you support us.
And now, I have to go, just writing this is stressing me out.
Wednesday, April 20, 2011
Sleep Stress
I slept half sitting up, hand on my face, leaning on my elbow last night.
I woke every hour and forced myself to sleep normally only to wake up the next hour in the same position.
I woke up at 5 and moved to the couch.
I was anxious about everything I always am, plus the blood in my urine (gross hematuria) that started Thurs. night prior to my discharge and has been increasing.
I don't feel like I'm being taken seriously about this.
Actually, I feel like I've had to advocate for myself more in the past 6-9 months more than ever before.
I have visible blood in my urine with increased flank (kidney) pain after having my ureter compressed by a tumor, a nephrostomy and stent placed, then the nephrostomy tube removed sending my into a bacteremic psychosis only to have continued bleeding for a week and a half later.
Tues. after the tube was removed I had a pelvic ultrasound that showed no ulcers, abscesses, or cysts, but at that point I wasn't bleeding like I am now.
And no to the obvious question. I don't get my period. I haven't since 2006.
I've been calling, pushing for a blood test to determine if I need a transfusion.
Today I took the test and I don't, Maybe since I had my neupogen shot, but no effort has been made to find the cause.
"Call if you start clotting" is the response.
I won't start clotting. I'm on lovenox. If I clot I'll run to the ER crying and praying the next one doesn't go to my lungs or brain.
At DF the first sign of bleeding I had an ultrasound and was given a depo shot after determining it was a cyst.
I wonder what's the change.
I'm concerned It's correlated to my choice to live with, and not cure, my cancer.
Many people don't understand this choice. I didn't understand this choice until I made it myself, over three years after diagnosis.
I hope it's not a consequence of all the cuts being made to health care, declining reimbursment rates coupled with rising costs leading to lack of quality care.
Either way, I'm stressed, and I know I do it to myself too.
Here is what I'm hoping to accomplish in my "free time:" Finish 5 eagles site 2. Send Linda publishable posts. 3. Add to cancervivor: purchases are tax deductable with receipt up to $250; above $250 donations are tax deductable with a social security or FEIN #, available upon request. Add pics too, affordable earrings 4. Ask for old unwanted jewelry donations. 5. Make bio cards with stamps of authenticity 5. Edit and finish book. 6. Search for publisher 7. Organize and clean. Separate into trash/donate/sell/keep. 8. Re-apply to extreme makeover 9. Get relay for life page up with donations on site.
Any helpers or suggestions?
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