Treatment never stops.
This past Monday, I went to clinic for blood, check-up and Zoledronic acid infusion. The infusion is brief and is used to treat and prevent osteoporosis, which I have. Blood counts were stable besides high triglycerides and low IgG (immunoglobulin) levels.
So what’s next?
We treat the low triglycerides level with a new prescription for TRICOR (or the generic because Medicare won’t approve the brand). We treat the low IgG level with an IVIG fusion this week. And my immune suppressant medication is lowered as a reward for good overall blood counts. Of course, if I have any trouble breathing the meds go back up.
I have taken some form of immune suppressants or steroids for 4 years now trying to combat lingering graft-versus-host disease in my lungs. This will be our third attempt to taper and remove such medication from my everyday life.
My week wasn’t all gloom, however. Gabe lost his first tooth. He is the absolute best. Unlike Santa Claus, the tooth fairy did visit my home and he was a happy boy. I had the chance to get out of the house Thursday night. Saw some lost but not forgotten souls and received a few well wishes and compliments on my weight loss. It was a pleasant surprise.
This week will be busy. 2 visits to physical therapy. 1 Reiki session. 1 trip to Dana Farber. 1 infusion. 1 elementary school parent open house. 4 pickups, 4 afternoons, and 2 nights with my son. Who says being unemployed on disability is an easy job?
In the timeless words of Porky Pig, “That’s all folks!”
Cheers.
Sunday, September 30, 2012
Thursday, September 20, 2012
Renting Time
Tonight, I ramble.
In my eternal struggle to sleep, I found “Rent” showing on the television. The movie adaption pales in comparison to the Broadway productions, however the soundtrack is still quite amazing.
In many respects, I can relate to the two main characters. Roger, the man struggling to survive a tragedy to find his one song in life. And Mark, the man filming the life around him yet forgetting to life his own.
Forgive me for sounding immature and trying to compare my life to a musical about “Bohemians” in New York City living with AIDS, but living with cancer is just as bad. Tomorrow could just as easily not come for me.
“Will I lose my dignity?
Will someone care?
Will I wake tomorrow from this nightmare?"
Find the dignity in failing to reach the restroom and needing to be changed. Find the dignity in vomiting every evening at 3am? Find the dignity in the inability to shower on your own, or not being able to kiss or embrace your child?
I won’t discuss if people care of not. Some do. Some don’t. Sometimes, I do. Sometimes, I don’t.
Will I wake tomorrow from this nightmare? This poses an intriguing question. Will I wake? Yes. But the nightmare will never be over. Every day is a fight, a struggle, and in some ways a nightmare.
Once, an oncologist told me I was too cavalier. Of course, I proved him right. I have been coughing, congested, and feeling downright shitty for the past 2 weeks. Wednesday in between physical therapy, picking up Gabe and a lodge meeting, I made an appointment to see my primary care physician. This comes only one weekend before my regularly scheduled blood, check-up, and infusion at the Dana Farber.
Will I wake from this nightmare? No. The nightmare is my life. In a way, we are all just renting time. But don’t feel sorry for me. I do it enough for us all.
Cheers.
In my eternal struggle to sleep, I found “Rent” showing on the television. The movie adaption pales in comparison to the Broadway productions, however the soundtrack is still quite amazing.
In many respects, I can relate to the two main characters. Roger, the man struggling to survive a tragedy to find his one song in life. And Mark, the man filming the life around him yet forgetting to life his own.
Forgive me for sounding immature and trying to compare my life to a musical about “Bohemians” in New York City living with AIDS, but living with cancer is just as bad. Tomorrow could just as easily not come for me.
“Will I lose my dignity?
Will someone care?
Will I wake tomorrow from this nightmare?"
Find the dignity in failing to reach the restroom and needing to be changed. Find the dignity in vomiting every evening at 3am? Find the dignity in the inability to shower on your own, or not being able to kiss or embrace your child?
I won’t discuss if people care of not. Some do. Some don’t. Sometimes, I do. Sometimes, I don’t.
Will I wake tomorrow from this nightmare? This poses an intriguing question. Will I wake? Yes. But the nightmare will never be over. Every day is a fight, a struggle, and in some ways a nightmare.
Once, an oncologist told me I was too cavalier. Of course, I proved him right. I have been coughing, congested, and feeling downright shitty for the past 2 weeks. Wednesday in between physical therapy, picking up Gabe and a lodge meeting, I made an appointment to see my primary care physician. This comes only one weekend before my regularly scheduled blood, check-up, and infusion at the Dana Farber.
Will I wake from this nightmare? No. The nightmare is my life. In a way, we are all just renting time. But don’t feel sorry for me. I do it enough for us all.
Cheers.
Tuesday, September 11, 2012
Let's Get Physical
Physical therapy (PT) became on Monday after assessing my needs at last Wednesday’s consultation. Coming off of a double orthoscopic procedure there has been pain, stiffness, swelling, and lack of mobility.
During the assessment, I mentioned a certain snapping, which occurs below both knee caps and towards the exterior of my knee when I straighten my legs from a 90 degree angle. Sarah, my physical therapist, believes this could be my IT (iliotibial) band. It snaps loudly and hurts.
The iliotibial band is a superficial thickening of tissue on the outside of the knee, extending from the outside of the pelvis, over the hip and knee, and inserting just below the knee. See picture below.
At the PT office, they have heard a woman’s band snap so loudly in her hip, it sounded like she broke it. It commonly tightens on men, and in most athletes who typically run, hike, bike, or weight train (specifically squats). There are ways to loosen the band. You can utilize a foam tube like a rolling pin and roll over the band continuously. Heat helps and ice only if sore.
My largest concern is quad strength. Seeing I am unable to do seated quad lifts until the IT band loosens, we are working different avenues. Began hips thrusts while lying on my back. I feel like there should be a pole and disco globe, when I practice. Front, rear, and side standing straight legged leg lifts. Weighted-standing forward knee bends. I will go 2 days a week and perform the exercises another 1-2 days plus using the stationary bike.
All in all, I did fine. Slight tightness today coupled with a little dull pain. I hate to go back and say it was too easy, but it was. We’ll have to step it up a notch. The saying “no pain, no gain” doesn’t apply, but I need more of a challenge.
As for cardio, running is out of the question at this time. Running equates to 3 times your body weight into your legs with every stride. Given the current state of my necrosis, my legs could snap like twigs. So, low impact walking and bike riding are my options.
So what are my goals? My short-term goals are to walk without swinging my legs from the hip, be able to climb up and down stairs with both legs, and walk a 5K, before having either knee replaced. My long-term goal is to live a long life and continue fighting until my last breath.
Cheers!
During the assessment, I mentioned a certain snapping, which occurs below both knee caps and towards the exterior of my knee when I straighten my legs from a 90 degree angle. Sarah, my physical therapist, believes this could be my IT (iliotibial) band. It snaps loudly and hurts.
The iliotibial band is a superficial thickening of tissue on the outside of the knee, extending from the outside of the pelvis, over the hip and knee, and inserting just below the knee. See picture below.
At the PT office, they have heard a woman’s band snap so loudly in her hip, it sounded like she broke it. It commonly tightens on men, and in most athletes who typically run, hike, bike, or weight train (specifically squats). There are ways to loosen the band. You can utilize a foam tube like a rolling pin and roll over the band continuously. Heat helps and ice only if sore.
My largest concern is quad strength. Seeing I am unable to do seated quad lifts until the IT band loosens, we are working different avenues. Began hips thrusts while lying on my back. I feel like there should be a pole and disco globe, when I practice. Front, rear, and side standing straight legged leg lifts. Weighted-standing forward knee bends. I will go 2 days a week and perform the exercises another 1-2 days plus using the stationary bike.
All in all, I did fine. Slight tightness today coupled with a little dull pain. I hate to go back and say it was too easy, but it was. We’ll have to step it up a notch. The saying “no pain, no gain” doesn’t apply, but I need more of a challenge.
As for cardio, running is out of the question at this time. Running equates to 3 times your body weight into your legs with every stride. Given the current state of my necrosis, my legs could snap like twigs. So, low impact walking and bike riding are my options.
So what are my goals? My short-term goals are to walk without swinging my legs from the hip, be able to climb up and down stairs with both legs, and walk a 5K, before having either knee replaced. My long-term goal is to live a long life and continue fighting until my last breath.
Cheers!
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