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Early May 2014: Chemo Begins

ejourneys's picture

Chemo, Day One (copied from blog entry dated May 8, 2014)

I had my first chemo infusion earlier today. Was able to drive home, though M was prepared to drive if I couldn't. I became slightly headachey during the infusion and for a couple of hours thereafter, but that faded without added meds. Stomach feels a little off, but no real nausea (lots of burping). Bowels are in will-they-or-won't-they mode. (Says M, who has MS, "Welcome to the club.") Drank 12 cups of water yesterday and have surpassed that today. My water bottle is my constant companion.

I lay down for a couple of hours after I got home. I felt a slight body tingle when I got up. The taste of water seemed slightly changed, though not unpleasant. Both the tingling and the taste change seemed to lessen once I started moving around. Had a peanut butter sandwich after I got home and some Brussels sprouts following my quasi-nap.

Frequent, small meals are recommended, along with frequent sips of water. So far, eating, drinking, and moving do a great job of regulating the mild side effects I have. When I feel them increase, even a little, I know it's time to take action.

Two days after surgery, I still have some tenderness around my port, so the chemo nurse gave me a good spritz of numbing spray before she accessed it. Was told I could remove my port bandage (gauze and adhesive tape, similar to what one would get for a blood test) an hour after I got home. Was extra careful because the tape had taken a shine to my two-day-old surgical glue. I didn't want that glue going anywhere.

Will be back at the cancer center tomorrow for my Neulasta shot, whose job is to rebuild the immunity I've just knocked down.

I've been taking some walks around the house and did some gentle dancing at my desk. Am being very attentive to what my body tells me -- not pushing it, but not resting on my laurels, either. I feel like a hardy weed that has now been hybridized with a delicate hothouse flower.

I spent the past few days training myself to keep from crossing my legs (which is a big, all-caps no-no because it can cause edema). They don't want me crossing my ankles, either. Other adjustments include an OCD-level of hand-washing, including using a paper towel to turn the faucet off; drying my hands with a paper towel; and patting dry rather than rubbing. Hothouse flower, indeed.

I'm tracking just about everything. Side effects. Temperature. Weight. Bowel movements. Water consumption. Meds taken. M has been doing more sweeping up. We've both had our moments in the days leading up to today, but she's being a real trooper in all this, for which I am very, very grateful.

Well, Duh (copied from blog entry dated May 9, 2014)

Edema is one of the potential side effects of chemo. I noticed last night (and logged on my side effects form) that my feet and calves were a bit swollen, but without discomfort.

Have I mentioned that I drank 17 glasses of water yesterday? (At least 10 glasses/day are recommended, to help clear the body of toxins. Also, chemo can dehydrate you something fierce.) My blood pressure has been clocking in at 90-something over 50-something , which is low in general but not really low for me, given my fitness level. Edema can result from low BP. (It can also result from high BP.) And although high sodium levels are usually named as a culprit, edema can result from low sodium levels, diluted by all that water. Something to raise with my medical team.

"According [to] the Ohio State University Medical Center, you should engage in some type of light exercise every waking hour to alleviate your leg edema. Perform the amount of exercise you are comfortable with, and do it regularly. Further, elevate your feet three or four times a day for at least 30 minutes per session." -- Livestrong: Exercises for Leg Edema

Yesterday I took regular walks throughout the house and I continue that today. (I also did some gentle dancing at my desk.) Today I've started doing light exercise on my mini-bike, making sure that I feel comfortable and am not overdoing anything. I also slept with my feet raised on a pillow.

Am very happy to say that I awoke hungry at around 3 a.m. and had a peanut butter sandwich. My calorie count yesterday was lower than I'd like, but not drastically so. It was up over 1200 , but was 355 calories short of what I need to maintain my weight under ordinary circumstances. I'm also happy that I had gone over my maintenance goal in the several days leading up to chemo, to build a caloric reserve for this kind of thing. The head chemo nurse promised me she'd be on my butt if I wasn't eating enough.

That said, between the edema and what is now officially mild constipation (according to my chemotherapy side effects worksheet), my weight shot up 5 pounds overnight. As I write this, I am enjoying a prune-banana-applesauce-yogurt smoothie that I've modified from this recipe. If that doesn't work by tomorrow morning, I'll turn to the big guns. If nothing works by midday Sunday, I get to call the doctor's office. The weight gain is incidental; it's the stuff causing it that I'm monitoring.

Today was a big day, of the sort that is not usually a big day except that it is for me when combined with chemo. After getting my Neulasta shot to rebuild my immune system, I made stops at the post office, our local pharmacy (to get my Rx for a second anti-nausea drug to take as needed once the 3-day Emend runs out tomorrow), and the supermarket.

Normally an outing to do errands at the PO, pharmacy, and market is nothing. This time I carted my water bottle everywhere with me, sipping from it when my body told me to. Also, I need to wear long sleeves outside while under chemo treatment, which I did today in 91-degree heat, and with my collar buttoned up so as not to expose my chemo port to the elements and to others. To protect my compromised immune system I regularly dipped into my small bottle of hand sanitizer. In the bathroom, I washed my hands both before and after using the toilet and took advantage of toilet seat liners. To protect other people -- especially since I am still officially toxic for another day -- I flushed twice. Furthermore, according to a handout at the cancer center, "Faucet taps can be loaded with germs. Use a paper towel to shut off the water." I've been using paper towels like nobody's business -- and taking the time to pat, not rub my skin dry. It's like learning a new set of cultural practices.

M and I are learning new traditions as well. She's been more forthcoming about her own physical limitations as someone with MS. We are working on making more room for each other. I think my reduced abilities and my candor about them have made her more comfortable disclosing her own challenges -- many of which I already knew about, but not all. We continue to learn the fine art of brainstorming and compromise when our diseases come up against each other.

Next week I return to the cancer center for more blood work and consultation with an Advanced Registered Nurse Practitioner. The week after that, I consult with my oncologist.

I'll bring at least two items with me. The first is my totally nerdtastic side effects etc. report, filled with delicious detail because I am logging darn near everything. The second is this:

(It's actually this image, which looks more badass to me but which shows up huge here.)

Twice now, my oncologist has warned me that I'll lose my hair. Big whoop. I told him that I really couldn't care less about the hair and that my main concerns had to do with the effects of chemo on my major organs.

"We can fix those," he said, and added that they could do nothing about the hair. (No big deal, I thought; the hair grows back in time.)

I asked him if he had ever seen Star Trek: The Motion Picture. He hadn't.

I told him, "To be honest, one of my first thoughts about losing my hair was that it would be neat to get a high collar like the one Persis Khambatta wore when she played Ilia in that movie. She went bald for the part."

It was a revelation to him -- not just her acting in Trek (for which she is best known in the States), but the fact that I had heard of her.

"Only in that role," I said.

Khambatta (you can see her with her hair here) had been Miss India and then a model for companies such as Revlon. She had become the first citizen of India to present an Academy Award in 1980. She was also a compatriot of my oncologist. (She had died of a heart attack in 1998 at the age of 49. If she had lived, they both would be about the same age.)

I printed the image of her as Ilia to give to him the next time I see him. Not only is it neat that Persis Khambatta gives us some non-cancer common ground, but the fact that she had gone bald for the part and still looked gorgeous might just help him when he counsels women for whom hair loss is a much bigger deal. At least, that is my hope.

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