Happy (or unhappy, it’s too early to know) Monday.
It is 5:50 am, and I have all ready been up bathing and snuggling a very uncomfortable little boy.
X has been waking up at some point in the middle of the night/ early morning since his surgery.
Sleep stops the routine of pain medicines and he also has a tendency to breath through his mouth, which dries out his throat.
That doesn’t look comfortable to wake up to.
We’ve been doing a lot of middle of the night baths and showers.
Hopefully, this pain will end soon.I told him he would be good to go for “field day” June 18.
I need to call the school today to see if they need chaperones. I have a little bit of a “to-do” list for the day.
June 18th is the official last day of school at Charlestown Primary.
My child will have officially worked through kindergarten and made it into the first grade.
I just need a second to process that. . . . . . . .
All X cares about is that June 18th is going to be a fun day with no homework, outdoor playing, and music.
He’s been talking about it since his surgery.
We have marked it on the calendar so he can count down the days.
We have a lot of calendar worthy events coming up, with my renewed health and all.
I did say I was taking this summer to have FUN, and I meant every single word of that.
We have plans, which include field day, coaching Xander’s soccer team (Go Team Ford!) and having a Master Frog Catching Championship.
Xander is a master Frog catcher. He has seen the pictures of his targets. He is contemplating his strategy so he will be prepared for next Sunday.
This is all just jam packed in a week.
Our family has certainly had an upswing in good news.
Congratulations is in order for my mother, Nancy St.Pierre, who over the past weekend was elected, unanimously, as Dental Hygiene Chair to the ADEX committee.
This is the committee in charge of creating a nationwide, standardized test for dental hygiene students, much like the existing, nationwide standardized test for licensure in nursing.
Currently, dental hygienists take a standardized test to prove competency for licensure, but that test is not accepted in every state in our nation.
This is certainly a barrier to relocation, and as with most health related jobs, dental hygienists are a commodity, having to retake a standardized exam after practicing for 15 years in one state is a huge deterrent to good professionals.
Nursing encountered the same problem in the past. If a person took a standardized test in NH, and passed successfully, that did not necessarily mean they were able to practice in VT, even though, like me, they could live 5 minutes from the border. That was prior to the birth of the NECLEX Exam, which standardized and streamlined one test based on basic knowledge all nurses need to know.
Now, if I take the licensure exam in NH for my registered nursing license, I just have to go through a process of paperwork to obtain my license in VT.
This is what Nancy will be trying to attain with her newly elected position in the dental hygiene field.
I’m gushing. I am so very proud. I never thought I would be bragging on my mother. I always thought it was the parents job to get all excited about their children’s accomplishments, but this is huge.
Big congratulations are in order for that.
Our family is definitely experiencing and upswing in good news.
It certainly was about time. We have had our share of kicks when we were all ready down.
I thank my prednisone a lot for my renewed energy.
I actually have weaned myself to a lower dosage.
Prednisone is a medication I will be on long term for my graft vs. host side effects. Now the trick is to see the minimum dose that is effective in allowing me to live with the quality of life I desire.
Steroids do have terrible, debilitating side effects that must be balanced.
In this instance, my providers and I have decided that the benefit of long term steroid use outweigh the risks.
The risks of long term steroid use include adrenal insufficiency, osteoporosis, weight gain, mood swings and anxiety.
There is also the pesky problem that is caused because steroids are essentially testosterone.
I can get hirsutism (hair everywhere), which is just ugly and unladylike.
It is also ironic.
Will I have to change the name from “baldie’s blog” to “bearded woman’s blog?” However, these are risks I am willing to take to have A LIFE, and that is essentially what has been returned to me.
I have decreased the dose, according to Doctor’s orders (well, a couple days early) to 15 mg daily due to my constant activity that certain borderline on anxiety.
I haven’t been able to get to sleep at night. I wake early in the morning. I go, go, go all day.
Don’t get me wrong, this is a huge relief from the years I have spent bed-ridden, looking out the window, hoping and praying that I would have the energy to do the things I love.
I am certainly not going back to those days, but it is imperative to find a balance whereby I can have a quality of life using steroids and avoid side effects.
Steroids also compromise the immune system. They cause increase in blood sugar, which for prolonged periods, could result in diabetes.I all ready have a compromised immune system, but I don’t want to add insult to injury.
My diet is being honed; however, the addition of steroids weakens the ability to control sugar in the body.
It’s pathophysiology, and it is certainly hard to battle that.
However, this medication regimen I am taking, including my supplements, does having me feeling happy and healthy. That is all I really want.
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."