I've been feeling a whole new kind of powerlessness this past weekend. . . . .
Sunday, February 28, 2010
I've been feeling a whole new kind of powerlessness this past weekend. . . . .
Thursday, February 25, 2010
Wednesday, February 24, 2010
Tuesday, February 23, 2010
Sunday, February 21, 2010
Friday, February 19, 2010
Thank you for commenting anonymous. All situations are different. With your WBC and ANC it does appear you are too immnocompromised to go anywhere. There are varying levels of compromise. I'm not sure what my numbers are currently, but I'm more than a year post transplant. Not knowing more about you, I wouldn't advise specifics.
My brain might as well
be malfunctioning mush with randomly firing synpases zapping messages at a whim forcing me to scramble in disorganized circles claiming I'm "getting ready" or "going somewhere."
Studies show The effects of "chemobrain" are seen, probably as a side effect of stress, before any therapy even starts.
I tried everything to prevent the forgetfulness, memoryloss, disorganization and plain old brain chaos that comes as a side effect.
First, I organized my house so everything had a place. Who needs to remember if it's a habit? I kept up with activities to save my mental faculties: reading, writing and learning, but still about march 2008, when the stress of a 2nd transplant and my husbands illness was too much I began to feel the big effects.
I could no longer make plans. I had no long term plans what so ever! I had always been a planner. My whole life was quesi planned then suddenly the future was an abyss of nothing. I'd try to make plans in my head for the following day only to be met with a frustration headache that once only hit when I tried to attempt calculus.
I thought it was the stress. I thought maybe it was grief after having been disappointed so greatly by the return of my cancer and all I had looked forwrd to with anticipation only to be disappointed.
Maybe it was a self protective mechanism.
I knew the chemo, transplant and radiation contributed. I also admitted that, yes, pr my pain anxiety or sleep meds had something to do with it.
Again I tried to prevent any further decline. I started to write everything down, sick of people using my memory loss to scapegoat things. I created my own electronic memory.
I never imagined it could get worse!
Now I can barely make it out the door without my mind darting in a hundred different directions it doesn't need to go.
Do I have enough money, food, water? Do I have my medications? What about x? Does he have his drink, ds, bag, whatever? Then, inevitably, I'll make it out the door with enough granola bars, but forget my glasses, which I NEED.
Today x and I went on an adventure to the boston aquarium. We call our excursions adventures.
It shouldn't have been a big deal. It's right down the road from heather's, but it felt like a big deal, probably because growing up cities like boston were far away and trips wre rare family events.
I was treating it as such.
Of course, just to make things difficult, in true worst case scenario form, last night p woke up with a fever, coughing and wheezes with retractions.
Retraction are a sign of respiratory distress.
I made sure to take my levaquin before I left so as not to bring anything down only to get caught next to this infection.
Prednisone is an immunosuppressive drug so with this I'm incredibly immunocompromised in addition to my all ready weak lungs. Whenever someone announces an illness in my presence or presents an illness, my mind shuts down. Fight or flight kicks in.
I have got to get out- immediately, much like a caged animal confronted with a predator.
This weighing on my mind, I gathered x and my things and escaped the house only to make it safely to the parking garage, look around, and realize the ticket for parking I had just snatched out of the machine two seconds earlier was missing. MIA.
I had put it on my steering wheel next to my glasses case, at least I thought I did. For all I know I crumpled up the piece of paper and ate it (definately a possibility, especially with the steroids).
I might as well have just chucked it on the ground and stomped it. Two minutes after getting it, it could not be found in my purse, pockets, floor, coat, bag, you name it, not there.
My $13 parking had just gone up to $38. Ouch.
Thank good ness for dear heather who has an aquarium membership that got us in free. The aquarium is great, my budding photographer and animal lover loved it, especially the animal ambulances which could be mambulances (mammal ambulances) or animalances (animal ambulances), but not quite worth $50 for the hour it takes to conquer.
At least Boston even takes good care of its marine wildlife.
I did find it pretty ironic that there was a gigantic "legal seafoods" across from the aquarium where we could go eat after x saw the beauty of living under water wildlife. C'est le vie.
We didn't eat there though. X missed his cousin pierce soooo bad, or so he said convincingly enough to drop "disney on ice," which I so desperately wanted to see.
Despite the brain chaos and disappearing ticket, we did definately have an adventure HX style, and made it back to the condo safe and sound.
Tuesday, February 16, 2010
Sunday, February 14, 2010
Friday, February 12, 2010
An Achilles’ heel is a deadly weakness in spite of overall strength, that can actually or potentially lead to downfall. While the mythological origin refers to a physical vulnerability, metaphorical references to other attributes or qualities that can lead to downfall are common.
The strongest and largest tendon, the Achilles tendon connects muscles in the lower leg with the heel bone. Sports that tighten the calf muscles, such as basketball, running and high-jumping, or a direct blow to the foot, ankle, or calf can overstress this tendon and cause a strain (Achilles tendinitis) or a rupture.
Thank you Wikipedia for it's summary of the "achilles heel" double entrendre.
Don't think the irony of this has
been lost on me.
No worries folks, J's injury will not be our achilles' heel. There will be no tragedy of mythologic proportions suitable for thousand year old texts such as the Iliad. Life has calmed down.
I felt much more relaxed once we canceled our trip to New York. I was really having trouble with the idea of leaving J alone.
I also have all those "responsibilities" I have obligated myself to with the motivation of steroids.
My four Energy Efficiency and Sustainability Block Grants for the Charlestown Police Station are almost complete. I think I may have set a record with writing over 80 pages in 9 days.
I do LOVE grant writing. It is a great feeling to see a project and know that it may not have been completed, or that person may not have had a job, because of something I did.
I also LOVE Valley Orthopedics located right next to Valley Regional Hospital. Dr. John Houde has been a dear friend of mine since we worked together. He and his staff have been incredibly supportive through my battle, and they treated J like family.
They treat all their patients like family.
I called Houde right after J's injury and he had him see his partner, Dr. Weiss, the very next day. An MRI was scheduled for Tuesday night in hopes of having surgery this week, in the ten day window when the procedure is most effective.
Luckily (or unluckily, I haven't decided yet), the MRI showed a 25% tear in the center of his right achilles (the center?) with so much fluid and swelling it was impossible to determine if the benefits outweighed the risk of surgery.
There was no surgery for J this week, just a boot, lots of icing, elevation and pain management. He'll be on crutches for four more weeks, just enough to interfere with our planned trip to FL, which we'll likely cancel, since having him in a boot pushing my wheelchair around doesn't sound like the family dream vacation we'd hoped for.
Then he'll have another MRI and a determination of further treatment will be made then.
Fearing a mental breakdown, I went to pottery class instead of this appointment to learn how to glaze my goods. Aunt Becky, bless her soul, cleaned the house while I was gone so I could return to write in peace. Jon's mom watched X while we ran off to get his MRI.
My head did not explode from the stress.
It may have. It has threatened before.
When J and I were both looking at simultaneous procedures, a bowel reesction for his Crohn's that took out 18" of bowel and me moving to Boston for a clinical trial in preparation for transplant, during J's colonoscopy my eyes started to wiggle.
They jiggled back in forth like nystagmus, an ominous sign of an intracranial bleed or tumor, like my eyeballs were shivering.
I ran to my NP who brought in a neurologist to calm me down.
I thought I may be so stressed Id wind up in a dissociative fugue with complete amnesia or with a conversion disorder that mimicked a stroke.
Seeing my family hurt, without control over the situation, is my achilles heel.
You've heard it now. I would have lost my mind if my son was suffering the way I do.
I combat the stress by thinking
of things I am grateful for.
Study upon study of happiness has shown that being grateful not only adds quality, but years to your life.
Happiness studies are big business right now. There is a whole book entitled, "The Happiness Project" dedicated to finding what makes people happiest on earth.
Studies have also proven that if you put on a smile, grin and bear it, eventually your feelings will follow.
This is not to say if you are clinically depressed or diagnosed with an awful disease put on a smile and everything will be okay.
Try that alongside your anti-depressants, anti-anxiety, and any and all anti-bad feeling solvers you need.
Tuesday, February 9, 2010
That is an after thought. That's a thought that comes in amidst all the worst case scenarios, all the 'we are going to end up bankrupt and homeless" or "our poor child is going to be an orphan" when your mind is about to explode, bc it can't take the thousand alternate terrible possibilities.
That is when a soothing thought comes through. Even then you know it's just to comfort yourself so you don't crumble to bits and have a psychotic breakdown at exactly the time you need to get your game face on and move full bore ahead for your family and loved ones.
This is the three point shot at the buzzer to win the championship moment in life. Either you are in it to win it or you're not in the game at all.
Except with this being life, We all know what the stakes are. It would be easier to be paralyzed by the fear, curl up in a ball, close your eyes and pray for it all to be over. That's how you would lose. Its time to keep your mind right and definately start praying.
I've been popping ativan.
I know it is just Jon's
achilles heal. We've been through far worse before. He saw Dr. Weiss at Valley Orthopedics yesterday that confirmed he has a partial tear. Based on the MRI we hope to get ASAP he could be having surgery Thursday.
It is a surgery that will take 3-6 months to heal from. Without the surgery there is a higher rupture rate and a longer (4-7 month) healing period.
The timing just sucks. I'm on my steroids so I can have happy bonding time with my family. We wanted to create memories together that would last all of our lifetimes. Now the roles have changed.
Jon is sitting on the couch, unable to move, and I am waiting on him.
After I get over the grieving and the loss of all the trips we had planned to do while he'll be recovering, I'll enjoy waiting on him. He does take good care of me while I'm sick, letting me stake out in the sick corner, delivering me food, water and medicine, cooking dinner, and cleaning everything that bothers me.
Now it's my turn to care for him, and I don't mind at all. I like it. I just don't like that what could be my last period of health is not going to be spent having great times on vacations. It's not like we can say, "No worries, we'll just change the trips and do them next year."
Who knows what's coming next year?
With this on my mind I've had the week from hell. I've been hanging out a lot with my BFF, lorazepam.
My houseguests had just left before Jon came home injured. I have a full house to clean and no energy. God Bless Aunt Becky who will clean it for us tomorrow. I physically can't haul laundry to our basement machines due to my lungs and now neither can Jon.
I'm in the midst of writing grants for the Charlestown Police Department. It is something i had contemplated doing while I was ill. Less than a week ago my father said he wanted to apply for NH's Energy Efficiency and Conservation Community Block Grant which would upgrade the proposed new police department to an energy efficient one. This entails writing four separate grants one for the building envelope, one for the PV System, one for the solar hot water and space heating, and another for lighting upgrades to energy efficient fixtures.
Oh yeah, and it's due Feb. 15.
I'm feeling the stress, and the only thought that has helped relieve it so far is canceling the family trip to NYC this weekend that we had planned.
We had only purchased tickets to see The globetrotters at Madison Square Garden. I think we can sell them. I just don't like the idea f leaving Jon alone at home when he is struggling so badly, especially to go do eents we were supposed to be doing together. It just wouldn't be any fun.
Hopefully we can reschedule it for the end of Feb. or spring when my mom has another conference (that's how I go on these luxury trips), and we can all enjoy the experience.
Maybe then I'll finally get my horseback carriage ride through central park.
Sunday, February 7, 2010
You are on the official site of Charlestown Winter Carnival 2010's Broom Hockey Tournament Winners!