Saturday, March 24, 2007

Day Two of New Chemo Cycle

I'm doing much better so far with this chemo cycle, and felt much better yesterday following the oxaliplatin infusion yesterday, and beginning the two weeks of Xeloda tablets.

The chemo nurse, Linda, sensed my anxiety when I arrived, and we talked about what happened last time, my worries that I would leave again feeling so awful I could barely walk, and my concerns about the lingering side effects. Dr. J, the oncologist, called from Wyoming, where he was lecturing to medical students, and updated me on the details of the changes in my chemo regimen. He ordered a calcium/magnesium infusion before and after the oxaliplatin, because it seems to offset the impact of the drug on nerves (neuropathy), and that did seem to make a big difference yesterday. He also reduced the oxaliplatin dose by 20%, and the Xeloda dose by 33%, so I'll be having a bit less of both chemos through this cycle.

When I left, my legs weren't hurting, as they were last time, and I didn't have numbness in the back of my throat. And today I don't have as strong a sense of my body just being completely out of whack as I did. I did still have trouble with pain in my arm when the infusion was about 3/4 complete, so I asked Linda to stop it. So, we stopped using the one arm and went to the other, and went to a larger vein in my arm, near my elbow for the end of the infusion. Linda was upset because she thinks that the oxaliplatin is just too tough for arm veins to tolerate, and that they should establish a policy that everyone receiving the drug has a port.

Anyway, after going to a second vein yesterday and having everything slowed down as a result, I'm ready for a port. Linda must have ordered it right away, because I got a phone call from the "line coordinator" soon after I got home, and I have an appointment to have it inserted on Monday, April 2, with my appointment beginning at 6:00 in the morning (Yeow!). Since I don't want to do another infusion without a port, I'm glad we have a plan. The port is inserted surgically in the chest below the collarbone, and provides easy access for the chemo infusion. And because this is a larger vein, the soreness with arm infusions just isn't an issue.

I also had a good conversation with Linda about my problems eating and my lack of appetite. After talking with her, I feel as if my problems have been normalized. Lots of people with various forms of chemo have lack of appetite, food tasting funny, decreasing appetite as the day progresses, and other odd things about eating, it seems. We talked about drinking as much as I can so as not to get dehydrated, about eating frequently, expecting to be able to eat less at a time than I used to, and just dealing with what is but eating as much as I can. I've lost 15 pounds or so in the last two months (some of it due to the stomach virus), and Linda said I need to stop losing weight and regain at least some of it. So, I feel normalized in my experience and challenged to keep getting more nutrition into me. She also gave me a book with recipes especially attractive to and useful for patients on chemo. It has lots of soup recipes, which I'll have to try when I have energy. I've been realizing that liquid food like soup tastes especially good to me.

On the subject of losing weight, I had something very funny happen to me while teaching on Thursday. I was wearing a pair of my favorite stretch corduroy pants, which are very comfortable, and I'd walked from the train station to my office without incident. However, when I was teaching, talking, and raising my arms to write a lot on the board, I began to realize that my pants were beginning to fall down. I slipped behind the big media center and hiked them up, and then found I had to do that repeatedly. Fortunately, they didn't end up around my ankles, which would have been beyond embarrassing, but it was a struggle to focus on my lecture, answer student questions, and keep up my too-loose pants!

So, that's my medical update and my medical state for today. It's a relief to feel more normal than I did last time.

This week was hard, with a need to focus intensely on work before I felt rested from traveling, and with my anticipatory anxiety about yesterday's chemo. So, I'm glad to be on the other side of all of that, able to nap today and tomorrow, and ready to get back into the rhythm of our daily routines. My continuing thanks to all of you who read this and follow my journey, and who post your words of love, support, and humor!


Carrie said...

I'm glad you're getting a port Lynne. That will make things much easier.

Just keep doing what you're doing and you'll get through this. I'm glad you spoke up about the side effects with your doctors.

You've got my full support {{Hug}} :)

Beverly Lacey said...

Thanks for posting the update on your chemo treatment. I'm so glad you feel more "normal" after this one. Glad you have a plan for the port. I know how you love plans and this sounds like a good one. I wish I was close enough to make some of your new soup recipes for you.
We are continuing to enjoy New Orleans and are getting lots of work done. The azaleas and flowering trees are at their peak and I'm loving the experience of spring in a new location.
Hugs to you, dear friend,

Anonymous said...

ok, need some colorful suspenders!! Join the farm clan!!
yeehaw! (said while jumping up and clicking my heels in the air...and chewing on a piece of straw)
The port sounds like it will make everything so much easier for you. Go for the easier stuff....why put battles where they don't have to go?
Soup sound deelicious! I am a personal fan of soups, myself ...but then again...what food DON'T I like??ha!
I shall peruse the recipe archives for some yummy ones.
When I was on jury duty awhile ago I went to this little greek restaurant for a cup of their lemon chicken and rice soup....O...My....God! It was deeeelicious!
Maybe I'll find one like that and get it your way!
Soup is just such a comforting food too, isn't it??
Lots of love going your way!!

Anonymous said...

I like the suspenders idea!
I'll bet you could paint some to match some of your scarves.
Or, use your scarves as belts. Very stylin'
It was 84 degrees here today...too warm for March so I send my warmth to you!
Susan H.

George, Group Admin said...

Please hang in there. I was one merkel cell cancer patient alone not knowing if there were others that had survived in the world, September 2005, I started my blog at google groups merkel cell cancer, now we have 122 members that have survived this cancer or are family members of survivors. We have also lost ten members in eight months.


Anonymous said...

I too am glad you are going with the port. When you speak about your arm hurting, mine hurts too. Gotta run, but one more thought: I'll be watching the bottom of your choir robe for fallen pants!!
Mary McCarthy

Anonymous said...

hey lynne- just catching up on your chemo adventures- lexie will want to talk to you i'm sure about your port surgery- she has a funny story about how to do it - it seems like the decision was made easier for you- the surgery is a no brainer, especially after all you've been through- your chest might be a little sore for a couple days, but lexie never took moe than tylenol and she was fine- i think getting comfortable for the first night in bed is the biggest hurdle, but no big deal- i'll let her tell you herself-
so glad the infusion went better overall and that you're feeling better- do you have betty crocker's living with cancer cookbook- it is great !!!!!! addresses all side effects and how to eat to deal with them- you need calories, girl, however you can get 'em- but healthy ones mind you !!!!!
talk soon, i hope-
love, alice

Anonymous said...

Lynne, Thanks for your earlier post, in March. I started diving in head first after fighting with eating problems caused by medications; one in particular. Can't reduce dose, nor do I want to. They are working for the condition I have (lifetime disability) very well. Just the eating supression that is (what word won't get blocked? LOL) a problem every single day.

Keep going strong.