Life Under the Scimtar

Carol's AML Pages
Life Under the Scimtar, or
What Do I Do Now That I'm Done With Treatment?

    Actually it's spelled scimitar, but my chemo-brain couldn't remember the word sword, much less spell correctly when I sent an e-mail to the AML list, looking for advice on how to survive the transition from being a patient-survivor to just a plain old survivor-survivor.

    When my doc said I was done with chemo, I felt like my train had kicked me off with a few bags of laundry and a cheery Ta-Ta! See you in a month!

    Boom! Out of a job that had kept me totally occupied for seven months. If I wasn't in the hospital, I was on house arrest due to low counts, waiting for the next infection. Plus trips to the clinic twice a week for site care for my Hickman catheter, along with blood draws to check on my counts. Even when my counts are good, I was always waiting for the next round of chemo, or a procedure, or something to do.

    I'd read that not being in active treatment was almost as stressful as being treated, which sounds bizarre. Chemo makes you green or worse, fuzzes the brain, shaves the head and makes those anemic-turkey sandwiches in the hospital taste metallic. But now I don't have my "job" anymore. I'm not doing anything active to fight the disease.

    Like the sword of Damocles, the cancer is just hanging there over my head while I'm supposed to what, get back to normal? What is normal? How do I allocate my time when I don't know when or if I'll relapse? How do you not go nuts listening to every cough and sneeze in the grocery store?

About These Pages

    This section includes ideas on how to cope with re-entry into life after initial treatment for AML. Some parts, such as Creative Distractions, may be very helpful for you if you're currently in treatment as well.

Updated 1/19/04

Cutting the Cord

    Whoo-hoo! The final, most visible link, for me anyway, to being a patient was my Hickman Catheter. When the surgeon asked yesterday how long I'd had it I answered, Seven months and two days. That sucker went in June 11, 2003 and has needed constant care ever since. Central lines are a real blessing in that you don't get poked constantly with needles for blood tests or medication, and don't need to have your arm taped up with traditional IV needles that can leave large bruises when your platelets are low. Mine was especially well-behaved, the nurses frequently oooo'd when blood filled the Vacutainer tubes without having me flap my arms or breathe deep.

How A Hickman Catheter Gets Removed

    I swear, I've asked a half-dozen or more nurses and have gotten as many answers. One said the cuff, which grows into your body to stabilize the tubing (ie, keep it from falling out or pulling out) stays put, and all they have to do is make a little cut and pull the tube out. Another said they do it in outpatient and the nurse just pulls the tube out. I envisioned my doc just snipping some invisible thread and whisking it away, presto!

    Not.

    The removal procedure takes an hour or less. Mine was taken out at the hospital in the x-ray produre room, mostly because that's where they had space for minor surgery. The surgeon wouldn't give me any happy drugs since I didn't have an IV installed, but your doctor might be a little more sympathetic. Actually, I really didn't need any tranquilizer, since the nurse who was assisting the surgeon kept me company, with the radio going in the background. After painting my chest in Betadaine, the doc poked around until he found a bump where the cuff was located under the skin. He put in 5-6 injections of lidocaine around the cuff; "bee sting" was how he described it, but I didn't think it hurt that much. Then he spent the next half hour making a small incision and carefully cutting away the cuff from the underside of the skin. Eeyuu, ish. I had to ask for more lidocaine after about 5 minutes when the cutting started to smart, then I didn't feel anything more.

    The cuff in reality is tiny, like 1/2 inch long, it just feels like it's huge with all the tugging. A few stiches under the skin, superglue the skin shut, slap on a few tegaderms and gauze pads and that's it. Oh, and somewhere during this he pulled out the tubing, which I didn't feel at all. The bandages stay on for two days, and in three days the site can get wet.

    The truly weird thing is the hole in your blood vessel slaps itself shut once the catheter tube is pulled out. The hole in the chest where the tubing went in also didn't get so much as a stitch -- it grows shut by itself.

    Discomfort Level Compared to a Bone-Marrow Biopsy: If a BMB is a 5, this was a 1 - 2. The gross-out factor is listening to the scalpel scraping, but then mine was adhered really well. Once I had a bit more lidocaine, I didn't feel anything. And I didn't have any pain after the local wore off, which was surprising.

Updated 1/16/04

Creative Distractions

Books

    A friend asked how many books I've read over the last six months, and was curious what I've been reading. Books are a remarkable refuge. Here's my growing list, with links to reviews, excerpts and/or reading guides. My comments are along the lines of how effective it was at distracting me, if I could read it while I felt sick or chemo brained, etc.

The No. 1 Ladies' Detective Agency series
by Alexander McCall Smith

    I devoured this delightful series of four books, each in 3-4 days, during Dec-Jan '04. Light, easy reading, good if you're feeling crummy or chemo brained, might be more appealing to women than men since the main character is female and has a high dialogue to explosion ratio. The links takes you to an overview, excerpt and reading group guide:

Updated 1/19/04