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, April 3, 2009

Dante's Inferno


I feel like I am in a circle of Dante’s Inferno.
Specifically, I think I may be in the circle where the greedy are destined to spend their eternity.
In this circle, there is an abundance of food, plentiful, satisfying food everywhere, but the people can not feed themselves. They can not eat without feeding each other. They try with spoons to lift the food to the mouths of others, but as it gets to their lips, the good falls.
This is hell. Having needs to survive and being continually denied is a circle of hell.
The idea of this punishment is that, in life, these people denied others what was necessary to survive, and now, for all eternity, they will live with the feeling of being denied their needs, never to have their hunger satisfied or their thirst quenched.
Xander has ear infections in both ears.
As if his life wasn’t difficult enough, he’s suffering from ear infections again.
This year marks the third year that he has received speech therapy from the Fall Mountain School system. At the third year, the child’s needs for help is reevaluated.
He still qualifies for speech therapy due to issues with expression and a delay in receptive language.
He doesn’t understand what people are saying, and he has difficulty saying what he needs to.
Since he was all ready being tested and he had been having outbursts of anger, we asked that he be tested for behavioral problems.
Surprise, X is depressed and anxious.
We have no idea why he would be depressed and anxious (sarcasm).
Having a mother with cancer and a father with Crohn’s disease certainly could not be the cause of his sadness and anxiety.
Knowing there is a real possibility that both parents could die as a result of illness is nothing a child should ever experience.
That he is experience alongside difficulty with interacting with the world breaks my heart.
Luckily, he has an appointment to see the ENT who has performed his three previous tube placements and the removal of his adenoids.
He’s going to see him on Monday at 8:30am.
X was Dr. Ryder’s very first patient. He had recently relocated to the area and was just beginning his practice when I brought him in with ear problems.
I was the first employee of Valley Regional he met.
Like everybody else, I told him I was a nurse, and he was suspicious as to what type of nurse I was. I look like I’m old enough to be a nursing assistant. I’m guessing he thought I may be 18 years old at the time, and he knew my son was two.
This wouldn’t leave time for college for a bachelor’s degree or certification in critical care.
I did have to be very specific about where I worked and what I did.
Since then he has been fabulous. I recommend him to anybody in the area that has ENT issues.
He dealt with my pain in the neck aka my first biopsy. I think he is also a plastic surgeon. Either way, he is an artist. I love his work. I trust him with my child.
We get to see him first thing Monday morning to discuss removing his tonsils.
I think these recurrent infections are due to his anatomical structure. His eustatian tubes are more flat than normal allowing for his adenoids and tonsils, when inflamed, to create a nice, warm place for bacterial growth causing recurrent ear infections.
I think this because I had this problem. My canal and tympanic membrane are scarred. My hearing is irreparably altered. I had to have my tubes, my adenoids and tonsils removed, and a deviated septum repaired before the infections stopped at twelve.
I am seeing Dr. Dana at Mass. eye and ear on Tues. The pains in my eyes are so severe I cannot look at my computer. I can barely look at my tv. To add insult to injury, the laci-tears that my ophthalmologist prescribed are not available through my local pharmacy, Rite Aid. I was given the script back, but with a sick child and difficulty seeing, I certainly am not able to run around finding a place to fill what I need.
Since my life also needs to be more difficult, the back-up tears I have I couldn’t open! My hands were too weak. I was forced to suffer because I couldn’t get the script I needed, and then I couldn’t physically open the back up Optive Tears I had.
I called Dana Farber which stated they would call in a prescription for restasis so I didn’t have to suffer and could see. I waited several hours before I called the pharmacy to see if my script was ready.
They hadn’t filled it. The pharmacist was taking the order. I was told I needed to wait TWO MORE HOURS!
No. The answer is no. I can not see. I’m typing with my eyes closed. I have a six year old who is sick. I give this pharmacy a lot of business. I have insurance. They receive full payment for me. I am also emergent. My eye sight could be at stake due to my GVHD. I get my scripts filled in Boston in 15 minutes.
There is a severe problem with their processes if there is a two hour wait.
Actually, ridiculous wait times for prescriptions is the loudest complaint I hear in from Claremonters. If you are sick and have used all your energy to get medical treatment, you do not want to wait another two hours in line for the prescription that will make you feel better.
There is no reason you should have to.
I asked that they fill their prescription requests like an emergency room and triage the most emergent. I am emergent. I should not have to suffer corneal damage because I have to wait 2 hours for a prescription.
The tech agreed, but not happily, and only this time.
I’m seeing (ha ha, it’s a joke, I’m not seeing anything) a public health problem that is severe. Infectious people lining up for hours passing along their ailments to each other while waiting for their cure could cause an epidemic. It could also be cause for some very angry sick people.
Eitherway, I think I’m being messed with. I’m being nudged towards the edge. The big guy is testing just how much my family and I can take. Our trials have lasted so long.
I am in so much pain I do not want to open my eyes, but I still need to take care of my poor sick baby.
My mother has run herself ragged with working while helping me recover.
The home show in Claremont is this weekend, and of course, my father’s business, Five Eagles Design, LLC (check out 5eaglesdesign.com) will be there. He does specialize in energy efficient modular home building. He has done gorgeous work. Nothing is beyond accomplishment, timber frame homes, chalets, cathedral ceilings, all that will qualify for energy star certifications. He does need to be there for his business.
Jon came home early from work when I could no longer take care of X, at about 1:30pm. When you’re sick, you really want to be taken care of by the one you love and trust. I know X feels this way. He needed some Dad time.

3 comments:

Anonymous said...

Allow me to make a plug for Bannon's Pharmacy, in Claremint, where no one waits two hours for a script. It's real, old fashioned, personal care. Something that's pretty hard to come by, in most places. Claremont is lucky to have it. We send all of our patients there. Walmart and "Wrong"Aid are a nightmare. May I suggest that you switch?

Alanna

Anonymous said...

An anonymous person with you and your family in my thoughts.

ann's daughter said...

You're an amazing woman and an inspiration, Hillary. I found you through Bekah [http://truebeautyneverhurries.blogspot.com/] and want you to know that your strength, your courage, your tears, your caring: your children are lucky to have such a role model. I was lucky enough to have my mother for 22 years before she succumbed to her own cancer; the years we spent living in illness's shadow taught me a lot about her, and myself, and how to live with strength and optimism and tragedy and comedy.

I see you doing that, not just for your family and friends, but for those of us who wander across your blog. Thank you.