BUMPS, LESSONS, AND CHANGES

TUES JUNE 23rd --- A friend recently wrote to me that it is wise to sometimes share my concerns and even my scaredness with Nadine, as well as my "up-ness" -- that the honesty is another affirmation of my love for her. And Nadine's friend Sylvia, overhearing me reassuring Nadine that it was okay to share "negative" feelings if they came up, gave me a big hug and told me that I should listen to that advice myself -- that it's okay to share them with my friends. I've come to see the wisdom, much as it goes against my "grain" ( although I don't intend to be a constant complainer).

Thinking over the week, it's "sunk in" how dangerous Nadine's sepsis (bacteria in the blood), was last week and how amazing it was that she'd snapped out of it that quickly, how amazing the care she got. The word "life-threatening" or "critical" was used for that infection -- shaking, fever, low blood pressure, fast heart rate, blotchy face. I didn't always remember that. Nadine told me today she hadn't realized how dangerous that infection was either. Although Nadine has indeed done beautifully for her situation, there are also times to reflect on the seriousness of this fight she's in, and to honor it.

I've experienced occasional frustrations -- although the medical care is usually excellent, occasionally I see something I need to "get through" to the staff, and encounter resistance. A few days ago, I noticed oozing in the incision for her porta-cath, and the staff thought it was normal.

Today, one of the nurse-directors noticed and said it looked like it could be infected. The surgeon was finally called -- he announced that that the port hadn't healed and needs to be removed tomorrow (whether infected or not) due to risk of infection, as her blood "counts" could drop during her next "round" of chemo next week. He said the port will be replaced next week with the "other" kind of port, which has two tubes hanging out -- this port is easier to "access" for medications, but needs much more care, and is bulky. . Nadine really wanted the type she already had.

I agree the port needs to go. However, as the head of the oncology department is on "floor" duty tomorrow, I want to as him if the "other" port is indeed the only medically prudent alternative for next week. Not enough communication so far. Arrrrggggggh.

I shared my upset with Nadine this time, and the two of us sat together in the bed as we thought together.

After that, we looked at silly hospital (and other) pictures together on the computer, and some normalcy returned.

She's gone to bed early tonight, and I'm relieved. I'm glad Erek's coming back tonight. I feel exhausted, like I've been run over by a truck.

I still had my cookie before bedtime.

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TUESDAY JUNE 23

The port was removed this morning. Although I expected the surgeon to "eject" me, he permitted me to stay.

I had a productive meeting with Dr. Mullen, the head of the pediatric oncology dept. He said that there was an excellent chance they could use the port Nadine wanted, but she'd have to put up with having regular (arm) IVs for about a week or two. Nadine said she'd put up with "pokey pokey" (her words) in exchange for getting the port she preferred. I was pleased that there was some wiggle-room. Provide, of course, there aren't other medical concerns.

READY FOR CONTACT SPORTS??

After the surgery, Mary Joan massaged Nadine. I asked Dr. Mullen if deeper massage was okay (it's not okay with low platelets due to risk of bruising). He checked his chart and said her platelets were so high that she could qualify for doing contact sports! So, she got a "real" massage. She's come a long way.

Later on in the day, there was a surprise visit from Hope and Tom, two wonderful musicians from well east of here. They brought guitar and fiddle and shared warm, wonderful conversation and some of the best music I've ever heard. Nadine watched from her bed, her face animated and her toes moving wiht the music. I thoroughly enjoyed it as well.

Nadine has been ravenously hungry lately, although she's lost weight.

It looks like if all goes well she'll be "discharged" Friday, and Saturday, Sunday and Monday off before returning to the hospital for her second round of chemo.