Category: Health

Imbruvica Keeps Me Alive

When the docs finally realized back in 2017 why I was sick, they concluded I had a blood disorder that at the time didn’t require any treatment. As the symptoms continued and assumedly worsened, I was put on Imbruvica, a hard to get and very expensive drug.

Every morning I take a couple of pills. They cost $300 a pill, give or take a few shekels. A bottle costs $12,000 to $14,000 a month. Not sure how I can afford it; insurance, I guess. Lucky I am in remission, though I still have to take it.

Now the US Government is investigating the Chinese company that developed it or manufactured it or distributes it. They might even have a lab next to the one that developed the covid virus. Who knows?

https://www.nytimes.com/2024/04/15/health/wuxi-us-drugs-congress.html?searchResultPosition=1

At least President Biden is aware of the problem. He wants the price reduced. I sent him a note asking him to make sure all who need it get it, along with an album of my Imbruvica images. Have not heard back from him about my note or the photos. He has other things on his plate.

 

 

Blood Today

SO, you have to have a blood sample analyzed. Now, instead of going to a hospital or lab near all the other imaging and testing devices, they send you to a place once called a drug store, but now a place that sells everything and takes your blood. To get there, opportunities arise to buy, buy, buy.

Modern check in. Doc has forwarded by text or fax the order. Reservations made on line like getting a table in a restaurant. Identify yourself, verify your insurance and personal information.

Take a seat.

Cancer Center Transport

So, when you go to the Lynn Cancer Center, you have many options. You can walk in or roll in. Lined up at the door and ready to use are chairs for those too weak to get in by themselves. Every time I leave after seeing my doctor or leaving a few tubes of blood, I turn those assembled in the waiting room and, after getting, attention, give a blessing: “Do as best as you can.”

Neurosurgery Counter Service

So, as we age, so does our back, maybe faster than our brains. Pain, pain, pain from every step. Stairs always a challenge. Getting up. Sitting down. X-rays. Rolling over in bed. Putting on pants. Wiping my ass.

CAT Scans. MRIs (a real joy for those of us with claustrophobia). How about an epidural? And there is always a surgical option. Want some pills. No, I drink for pain relief.


Every step of the way, Sharon sat next to me. It was as if she was the patient, asking questions, feeling the pain, sharing my emotions. Even though she has her own problems, nothing would make her happier than knowing I wasn’t as disabled as I am.

Dr. Brett Schlifka informed her, as if she was the patient. And, she did her own independent research. Great teammate.Great doctor. Smart. Caring. Talented. Likes his patients.

I learned what I could learn, rejecting the shots and surgery, accepting the suggestion to do physical therapy. Rejecting the opioids; living with the pain. So far, so good. Call me back, Brett said the other day. “Call when you need me.”

A back is a back. I have spinal stenosis. Have to be careful. Don’t fall. Maintain my posture. Respect my limitations. The only good thing about living in FL is the pool. And my life, not worth living without Sharon.

Argus

So, last night Argus visited me during sleep. He never closes his eyes, looking into the future and remembering the past. Both for me seem pretty scary.

I have never gained control over the remnants of my past trauma or regained any sense I had control over the smashup that stole my career and adulthood. Even my understanding wife has had a tough time living with it. So it goes.

The future remains dim, too, now that I face a multitude of physical problems: blood, skin and spine being the most pressing. But I forage on, trying as I might try to live in the present, always valueing what I have, rather than what I lost which will never again be within my reach. No more dreams or long range plans.

Florida is the kind of place where many leave behind their real lives.

 

Ibrutinib/Imbruvica

I have been taking Imbruvica for one year. I have not been sick, though I cannot say I have been well, either. But I am still alive and have not caught any diseases or had a cold. How long will it keep working? Will I have a relapse or go into remission. Tomorrow, the Cancer Doctor. I  like seeing him. It’s the sitting in the waiting room that I cannot deal with.