how do you ruin…

I asked this question about the oatmeal I got in the hospital 5 years ago. Yes. I was in the same hospital recently. The food hasn’t improved too much—too bland, no salt. But I ate some of it bc I was flat on my back for 6 days hooked up to antibiotics. Port was infected with bacterial infection. i was running a fever for 4 days prior to admittance. I should have known I was sick bc once again I was too weak to get out of bath. I called Dan but he wasn’t around. I struggled to get out for 15 minutes and finally made it.

With that frustration behind me, I finally called my doc’s office and told them I wasn’t going to ER & I thought maybe my port was infected. Since the er option was out ( I hate them), then my doc arranged for me to have a direct admit without going to ER. yay! another lesson: be adamant but polite about your health and what you need. You know your body best!

I was in the hospital Tues-Sunday. Friends and family sent beautiful flowers which I so appreciated! But I didn’t want visitors bc 1) I was tired and 2) I have unpredictable GI issues and was hooked to IV bag most of the time. Dan,of course,was welcome and sis Bev who’s oncology nurse. Bev brought me a stack of new magazines which helped. (But again I found I was too tired to read much.)

Last Wednesday I had surgery to remove my port and they couldn’t find a useful vein so they did anesthesia line through my foot which then was the port they used for later antibiotics and blood draws. Ivs in foot not terribly hurtful but hurt more than other places. Doc said veins close to bone hurt more. Not sure why-/I need to ask Dr. google.

They can’t put another port in until my blood cultures clear. And my skin on chest is ruined by radiation and protons and my clinical trial drugs so they’ll have to find new area—side? Dan says my chest reminds him of the burn scars he saw in books of people getting cobalt to skin//chest on the 1940s before they did away with bad radiation.

I’ll find out Friday when they can possibly do surgery. I loved my port bc IV peripheral infusion sucks and my veins are collapsing from so many years of chemo, age, dehydration.

Dan, bless him, has been enormously helpful. He brought me starbucks when he could. Also he spent 2-3 uncomfortable nights with me in hospital room. I’m very lucky.

Yesterday I was back at chemo (outpatient). yay for steroids which woke me up at 1 this morning but they make me all speedy and happy. Last week when I was recovering at home, I got rather despondent (my iron levels and magnesium low). Fortunately I was infused with magnesium along with my reg premeds of steroids, précid, zophran for nausea, in addiction to reg chemo drug. A long day 9:30-2:30 for chemo,

However my iron is back up to 9 instead of 8. I’ve been eating more steaks and spinach salads. It won’t cure my chemo iron deficiency, but any little bit helps since I feel like not moving from couch.

I will get more magnesium IV infusion next week which is good bc calf on right leg just snapped unexpectedly. Hurt to walk for 2 days and that’s one of the things that depressed me. Can’t go for walk, can’t go in hot tub (open wound) and the list goes on.Oh and not being able to be eating certain foods and drinking wine. Very basic things—like being able to hold my 4 mo. old baby for long although Elizabeth places her in the crook of my arm when she sleeps or if she needs a bottle.

And speaking of kids my dil is in Tennessee with 2 grands visiting which cheers me up tremendously .

My kids are having great career news as they move up in rank and I’m grateful not to have to worry about them. My parenting mantra was if you do a good job, you’ll have less worries later so no screaming or hitting them.

Finally advice from one who has ups and downs with terminal illness.

DON’t ASK: are you better now? (no i’ll never get better unless they find miracle drug) And even if one thing improves , I have more to worry about with side effects. It’s exhausting.

DO ASk: how are you? easier to answer.

That’s all folks. steroids made me do it!