Thursday, July 16, 2009

Live from the Infusion Center

The big change from last year is access to the internet.

I was not heavily pre-medicated for the IVIG. Let me pause there: Pre-medicated? No, that does not mean stretches or incantations or communal prayers before the medicated infusion begins. It means taking medications before the medications.  Shouldn't pre medication be something you do before medication? Would a better name be the medications you take before you take the real medications? Or more simply pre-medication medications. 

As you can see, it is not a good thing to sit me in a chair for hours and hours with an IV in my arm. My mind noodles away.

This time my pre-meds were only Tylenol and Claritin.

I refused the Dexamethasone (steroid) and switched from the heavily sedating Benadryl to the less drowsy Claritin. You have the same power- to say no or change your meds.

Despite my best efforts, I still was very very sleepy and have just woken up after four hours here. IVIG makes me tired, and I understand that happens to others too. No other ill effects.

It is strange to be back. People say happily: "It's been a long time." It would be wrong to say" Nice to see you again" or "Welcome back" That would sound creepy. Like prison and detention hall, the cancer infusion center is never a destination in itself and at its very best is only a launching pad to a better and healthier place. The kind nurses here at St. Jude recognize the awkward nature of their good work in helping the patients re-enter.

Like the ER or the funeral home, the infusion center has a sour ring if you say business is good.

The staff is cheery, efficient, and compassionate, but also subtle and professional.  I know how hard it must be for them to deal with all the repeat business. 

And yet the hidden dimension of this place is that there are too distinct exits- Exit One to a healthy distance away from the illness that brought the visitor. The other, Exit Two is to what some euphemistically call a "better place". Better than the hours in infusion chairs for failed treatments and far better than what is too often lengthy and horrible terminal suffering.

The nurses and staff all know this. The two ways out. And while the door here is still open to return, there is always the hope that we will all be leaving by Exit One. And so their smiles seem even brighter as they man this way station in times of crises. I am grateful.

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7 Comments:

Blogger Judy Cleri said...

Dear Dr. K,

Ok, way too much time sitting in the infussion chair........LOL!
Does you mind ever shut off?
We are praying for Exit/Door #1. Makes me feel like we are at Make a Deal.......

By the way, we just got the new schedule for the season.....and we already know of 2 games that we willnot be able to make.... hum...wonder if you know anyone who might like the tickets for one of the games??? I have promised my oldest Granddaughter the other.

Blessings to you and yours.

JC

July 17, 2009 at 7:22 AM  
Anonymous Anonymous said...

Just curious...how often is IVIG needed following HSCT? Is this a common occurrence?

July 17, 2009 at 12:25 PM  
Blogger Brian Koffman said...

IVIG is usually once a month for prevention of infection. For ITP it can be much more often, as needed.

July 17, 2009 at 1:53 PM  
Anonymous Anonymous said...

You didn't answer my question. I didn't mean to inquire how often the IVIG needed to be given to maintain Ig levels, but rather how often patients had the need for it after undergoing HSCT

July 17, 2009 at 2:37 PM  
Blogger Brian Koffman said...

While there is great variation in where to draw the line, nearly all doctors would agree that IVIG is indicated in CLL, when the IGG level is <400 and the patient has had 2 serious infections in the last year.

Seeing as it is rare for the IGG level to recover even during a deep and lengthy remission, and infections are the big killers in CLL, IVIG is used with some frequency in CLL, usually post treatment, including chemo, Campath, or HSCT. I have no idea what the percentage would be. It would be less useful in other cancers post transplant as they would likely have adequate humeral immunity, and that is all that IVIG replaces.

July 18, 2009 at 1:07 AM  
Anonymous Anonymous said...

The nurses in my infusion center are all very nice, some more so than others. They all welcome me as a familiar face, "Hi, how are you?" Glad to see you again!" (What they really mean is, I thought you'd be dead by now!)

Many people are in getting blood (as I have) or heavy duty toxic chemo for solid tumors. Lots of bald heads. Some celebrating complete remissions, (a joy I've never had). Many people are wheeled in in wheelchairs. Some come in on gurneys for last-ditch chemo. Others are in orange jumpsuits from the local prison.

Nice to treat mass-murders and other violent criminals with the latest in cancer drugs so they can live longer than their victims, whose lives they snuffed out without a second thought.

And in California, hundreds of inmates have had organ transplants. Their operation deprives a law-abiding citizen the right to that organ, so the hard-working, lawful person dies, while the scumbag lives, at great cost to society (since it's the taxpayer picks up the tag, not the pool of insurance clients, as it is for most people.

July 18, 2009 at 12:11 PM  
Blogger Chonette said...

Yesterday I pop in to the Day treatment center infusion room to say hello to the specialist nurses there now that I am back in Wiltshire and had not seen them for 4 months.
It was such an exiting moment and they all came and gathered around me telling me how well I looked and how during my transplant in London they had been kept informed about how I was doing, I stayed a short time as I know how busy they are, but when I left they thanked me for coming to visit, I was very touched.
I remember two of the nurses in London telling me when leaving, the second time I had to be admited to hospital that they did like me very much but did not want to see me again there.
I think specialist nurses have such special qualities as people.
Sorry to hear you are back on the infusion room having IgIV, I always expect I might be there again one day, but the news that there is no CLL in my tests is very uplifting at the moment.
Always thinking of you an grateful for all you have done to help and support all of us

July 22, 2009 at 2:11 AM  

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