Cancer Doesn’t Come to the Party Alone (by Judy)

A Facebook friend of mine who has lupus once told me

Lupus doesn’t come to the party alone

and went on to list other ailments she has had since she was diagnosed with lupus. I feel very much the same way about my cancer.

As most readers of my blog know, I was first diagnosed with Stage 4 Inflammatory Breast Cancer (IBC) in January 2008 after a month of tests. IBC is a rare and aggressive form of breast cancer. One explanation of IBC can be found at the Mayo Clinic website.

Anyways, my cancer certainly hasn’t come to the party alone. Throughout my treatment, I’ve been diagnosed with ailments that I either wouldn’t have without the cancer (or treatment) or that would have taken longer for me to get. Since I was diagnosed with IBC, I’ve also been diagnosed with arthritis, diabetes, and a pulmonary embolism (a blood clot in my lungs). It’s possible that I would have eventually had arthritis and diabetes because they run in my family. However, I suspect they would have come later in life without my cancer and the grueling treatment regimens I’ve endured. The pulmonary embolism is a direct result of having cancer, as my oncologist told me. I take medication for each of these conditions.

In addition, my teeth and eyesight have worsened because of the cancer and treatment for it. Currently, I also have dermatitis (a rash on my face and other places on my body that looks like pimples) and hand-foot syndrome.

Don’t get me wrong. I’m not trying to complain; I’m simply stating facts. Is this cancer different than cancer(s) that other people have? Well, yes. Each cancer patient, even each metastatic IBC patient, responds differently to cancer treatments. My treatment is individualized to me and my cancer and other conditions. I meet with my oncologist once every four to six weeks to see how things are going — what side effects am I having, how does my bloodwork look, etc. She is wonderful at asking questions specific to me, and I feel comfortable asking her about anything.

One place you can go to find out information about cancer treatment is a website called Is My Cancer Different? Is My Cancer Different includes sections on Individualized Cancer Treatment, Frequently Asked Questions, and Expert Insights. Each section includes subsections full of information from patients, medical professionals, and scientists that can help someone who is starting out on their cancer journey. It can even answer questions — or provide reassurance — to those of us who are (or feel like) old-timers in the cancer community.

I am so glad that my oncologist subscribes to the notion that cancer affects everyone differently. As regular readers know, I’m currently on a chemo regimen that works well for me. However, as my oncologist told me, some women can’t tolerate it. She also told me that some women have been on this combination of drugs for three years or more. That would be a good thing, of course, because I’ll be on this regimen until it stops working for me. At that time, she’ll find another chemo regimen for me. She’s told me that a number of women can live for “many years” with my condition. I haven’t yet – nor may I ever – ask for her definition of “many years.” You know, I have that nine (almost ten) year old son I’d like to raise to adulthood, and of course, I’d love to be here on this earth beyond that time. I just don’t know what the future holds.

No, my cancer – unfortunately – didn’t come to the party alone . . .

even though there was no invite.
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Cross-posted to Just Enjoy Him.

“well, you *look* great,” (by Judy)

people often tell me. “If I didn’t know you had cancer, I wouldn’t think you were sick at all,” one person said.

One of the great ironies of my cancer is that I look fine, healthy in fact, yet I have this insidious breast cancer that metastasized to my liver. In fact, the sicker I’ve gotten, the healthier I’ve looked because the one main physical manifestation of cancer — hair loss — isn’t there any more. My hair started growing back while I was on the second chemo, navelbine and herceptin, and has continued to grow back while I’m on this new regimen, tykerb and xeloda.

Also, besides the fatigue, which just seems to be a constant with all cancer treatment, I’m doing OK. So far, I don’t have nausea, diarrhea, or rashes on my hands and feet, which are possible side effects listed for this chemo.

I just also have no idea if it’s working.

There are those who believe that if I feel good and am “doing so well” on this chemo, it must be a good thing, I must be responding to the chemo. However, since I felt good (except for the fatigue) on the navelbine/herceptin mix, I know that’s not necessarily true.

In fact, I don’t seem to know what’s true anymore, as far as chemo treatment goes. I can’t predict this one. In a big way, I’m afraid to predict this one because the last two didn’t work and those failures were devastating. Not only did they not work, the cancer got worse throughout each treatment. Not fun, not fun at all.

I’m just trying my best out here, wanting to be and remain the best mother I can be to Energy Boy, wanting to stick around for him and for me so I can see him growing up.

I look fine. I feel pretty good (aside from fatigue and neuropathy in my hands). But the truth is that I’m sick.

I hate being sick. I hate this uncertainty. I need to get back to a place where I put my faith and trust into God, no matter what the outcome. I had that once; I need to get it back.

I just don’t know how.
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Cross-posted to Just Enjoy Him.

Just a happy note

Today I’m grateful for the chance to stay home with my kidlet, who is running a nasty fever, and just play legos with him all day. 

He doesn’t care that I have cancer.  Or that I’m too tired to take him to museums or coach his soccer team.  He’s just grateful for a snuggle.

And today, so am I.

First four days of Xeloda

By Sarah

I started my new chemo treatment on Friday morning, it was so easy. I took three pills and bam I was done! No trips to the hospital no sitting in a recliner for 4 hours. No hospital cafeteria food for lunch. It was a breeze. It’s a scary thing though taking a drug for the first time not knowing how it will affect you. Wondering if you are allergic or not. But I did really well. I was able to eat a nice dinner and really enjoy tasting it. It was a good Friday.

On Saturday we all piled into the car and headed out on a trip to visit a college for Miss H. I took My pills along and after stopping for a donut and some coffee I downed my next morning does of my medication. We arrived at our location and went through the open house without a hitch. I walked the whole campus (slowly but I did make it the whole way) and after we were finished we headed towards home and a birthday party. Now two weeks ago I would have not been able to go but I got to go this time. It was so nice to get out and do something not involving driving to the hospital. I enjoyed dinner and had a nice big piece of birthday cake. It seems that my appetite has returned and I am enjoying sweets, and other things that I did not have interest in eating before.

We spent a quiet day around the house on Sunday, Laundry, Football games and homework were the main events. I was a bit tired but not as sleepy as I usually am on the weekends. This morning I am feeling pretty good and am still drinking coffee. Which you know makes me very happy.

So far the only side effect I have is a bit of bone pain but Motrin takes care of that. I am back to cooking and cleaning a bit too. From what I understand I will probably have more side effects in my next cycle, but for now I am enjoying evey minute of feeling pretty good for now.

Xeloda: Day 1

(by Susan, @WhyMommy) Last night, we cleaned up the supper dishes, took the towels out of the dryer, and helped the children with their showers. Then we all put on pjs, climbed into the big bed to watch cartoons together, and I took my first three chemotherapy pills. My husband put his arm around me and said, “Thank you. Thank you for doing this for our family.”

and we all snuggled, watching Tom and Jerry discover silly green aliens on Mars while we waited for my body to react to the chemo pills.

…

This morning’s routine was not nearly as much of a ritual, squeezed in between showers and timed after breakfast and before we got distracted by the children’s needs.

So far, so good. I’m not reacting violently to the xeloda, which is fantastic. My oncologist says that we’ll know how I respond after a week, in terms of side effects, and after three weeks, in terms of white blood counts (that fight infection) and liver counts (which can be damaged by the treatment). So today I rest, and watch, and pick blackberries from the garden with the children.

My body now has the tools to fight the cancer.

Six pills down, 498 to go.

Originally posted by the author on Toddler Planet.