Monday, September 29, 2008

Messages

I am posting this post as a means of procrastinating the baldness post.

Got it? Okay.

I have received so many kind and encouraging e-mails, phone calls, visits, cards, and so forth. You know what? Those messages really do help. I feel stronger and loved. I am so touched to know that people are thinking about my family and I really believe that all our combined positive energy and prayers make a difference in my healing.

Most of the messages are just too personal to share, but I am going to share this one, from a very old friend, Alan. I hope he doesn't mind. I didn't ask permission. Sometimes I get a bit weary of all the sadness-scary-cancer stuff and appreciate a little humor. So here you go:

Since I have no idea what it's like to be chemo'd and don't have a good opinion on if I'd take it or leave it, I will hope and wish you the intestinal fortitude to persevere. I know it's bad (and bad ass) medicine. Can you at least get some Marinol or some of that Government Grown to alleviate some nausea, loss of appetite or melancholy attitude that goes along with being voluntarily poisoned? Now baldness, that I can relate to, having been that way several times. Have you had any surgery? Maybe you can get a new rack that will be perfect? Keep your chin up and think positive.

Wednesday, September 24, 2008

Two Down, Two to Go

Oh, my friends. I am happy to report that I have completed two of the four rounds of the AC chemotherapy. I am extra happy to report that round two was much better than round one, and while I am not certain that the next two times will go as well, I am very hopeful.

On chemo day last time, my ickiness hit me about seven at night and lasted several days. Don't get me wrong here -- it could have been much worse -- and I really felt like the anti-nausea drugs did their job well. Still, though, I was sick. But this time, I really didn´t have any tummy trouble. And my chemo headache went away after the first day. And my chemo brain was not so befuddled this time. The only thing that was the same is that I was tired. Way tired. Like sleep anywhere, anytime tired. And do you know how lucky I am? I was able to sleep and sleep and sleep some more.

Anthony took the boys to Boondocks after school on Friday to drive go-carts, and Mom took Christopher to Provo. Anthony entertained Nate until James & Mard took him to a 3-D moon movie and Chuck E. Cheese. Friends and neighbors and family brought food, so when I was awake, I was able to eat really good food before I went back to sleep. Oh, and when I got tired of sleeping, Anthony took me on a long drive to see the fall leaves. Not a terrible weekend.

After two more rounds of this AC, I switch to Taxol, and I will receive that chemo every week for 12 weeks. They say it's not as bad, but that I might have tingly fingers and toes. We'll see!

Oh, yes. My hair is gone. More on that event later. I'm not quite ready to talk about it yet.

Thursday, September 18, 2008

Hair Today ... Gone Tomorrow



My doctor and nurses have assured me that my hair is going to fall out. Slowly at first, they say, then in handfuls and brushfuls and chunks. Sounds nice, doesn't it? In fact, my infusion nurse calls Adriamycin the "automatic hair removal system." They said it starts about two weeks after your first treatment, so tomorrow could be the beginning, and if not tomorrow, surely it will be shortly thereafter.

So the last time I had George do my hair, I had him put in extra-long extensions so I could really live it up, Marcia Brady style, for my last few weeks with locks. Some people have suggested I cut it short now so I can get used to it, but I like my long hair, and I'm going to enjoy it as long as I can.

George took me wig shopping. It was depressing. But I bought a wig anyway and also a really cool sort of wig that will attach inside a hat. I also ordered some scarves and, frankly, I think they're much better looking than a wig.

I've been pretty concerned about the stigma of having cancer, and I haven't been sure I wanted people looking at me and thinking, "Cancer patient!" or "Chemo girl!" Truly, though, I'm not sure I care. I know cancer scares people, but it's what I've got, and I have to put up with it for a while, too. Surely, I shouldn't have to wear a hot, ugly wig, too, should I? If I don't want to?

But we'll see. Will I be brave enough to post a bald picture? Well, now, I just don't know about that. Courtney did, but she is gorgeous. I'm afraid I'll look like Gollum.

Tuesday, September 16, 2008

As If!

I just received this letter from Huntsman Cancer Institute:


Dear Kristy Merrill,

Thank you for obtaining your breast imaging at the University of Utah. We are pleased to inform you that the exam done on August 26, 2008 was normal.

Your breast images and report will be kept on file here as part of your permanent medical record and are available for your continuing care. Please be sure to inform any new physician or new mammography center of your medical record with us.

Remember that a negative mammogram does not exclude the possibility of breast disease. If you ever have a breast lump or anything else of concern to you during your self exam, you should not ignore it, regardless of the results of your mammogram. If you find a lump or other change, talk to your health care provider about it as soon as possible. Please keep in mind that good breast care involves a combination of three important steps: monthly breast self examination, an annual examination by a health care professional, and periodic mammograms.

The most recent mammography guidelines recommend yearly mammography beginning at age 40.

Thank you for allowing the University of Utah to help you in meeting your healthcare needs. We look forward to seeing you on your return visit.

Sincerely,

The Comprehensive Breast Care Center


Hmm. I guess they didn't get the message that Kristy Merrill has breast cancer. Oops!

My doctor recommended that my sister, Nancy, just skip the mammogram and go straight to the MRI, since she is high risk. I was also considered high risk because of my family history, but my breasts are also "dense," they tell me, and my mammograms all looked perfect.

Still, it's nice to hear that one test was okay, even if it was just wrong!

Sunday, September 14, 2008

Mail Call

This is what my mail looks like these days:

I got all of these medical bills in one day last week, and I received several more each day after. I am very, very fortunate to have good medical insurance the covers the majority of my costs, but even so, it's not cheap to have cancer.

But I don't seem to feel overwhelmed by keeping track of the bills; rather, each time I open them and pay them or follow up with the insurance company or the finance guy at Huntsman, I am brought back to the same thought: what do people do who cannot afford medical insurance? Do they simply go into debt? Do they delay or ignore treatment? Are they denied treatment? Do they have to go to an inferior treatment facility?

The other group that keeps coming to mind is the elderly. It is so difficult to deal with the physical and emotional toll of cancer, so how do weakened, older people navigate a pile of bills like this? How do they find the strength to call and fight with Medicare or the hospital? And remember to eat right and take their medication on schedule?

Do you have answers for me?

Friday, September 12, 2008

Round One

People, I finished my first round of chemotherapy! Last Friday, I started a regimen of Adriamycin and Cytoxan, plus a kabillion or so anti-nausea drugs to go along with the chemo.

Symptoms and side effects, it seems, vary widely from one person to another, even when those people are on the same drugs and dosage levels. Here's what I had: a painful tummy (that's still there), a headache (mostly gone now), a strong need to sleep at all times, feeling like I had the flu, complete with aches and pains, and "chemo brain."

I have heard the term "chemo brain," but not from the doctors or nurses who educated me All About Chemotherapy. My brain seriously felt as though it was functioning at about 40% of its usual capacity, and it continued to climb upward from chemo day until I finally feel almost back to normal today -- maybe 90%? Or maybe I just like that "chemo brain" as an excuse for my typical forgetfulness?

The day after chemo, I visited the hospital again for a shot of Neulasta, which is another one of the many miracle drugs I am lucky enough to receive. Neulasta helps my body create more white blood cells so that I'm not quite so vulnerable to infection. It makes my bones ache, but no worse than a regular trip to the gym, really. Still, I enjoy Lysol and hand sanitizer very much these days, and I think my boys are tired of me telling them to wash their hands.

My hair is still attached to my head, but the nurses refer to the Adriamycin as the "automatic hair removal system," so I expect to start losing it next week, and George has promised to shave it when it's all falling out. Even though Courtney looked great with no hair, I am not so optimistic for myself and am not looking forward to that day!

I feel well enough now that we can celebrate Ro's birthday this weekend, and I hope to get caught up on life again next week before round two: on September 19.

Sunday, September 07, 2008

Home Away From Home

I have been spending a whole bunch of time at the Huntsman Cancer Institute lately. It is a truly remarkable place and I feel so very fortunate to have such terrific health care resources available to me just 20 minutes away from my home. There are many patients who travel much farther than I to receive treatment here, including some from Alaska!



In addition to having the finest resources around to treat cancer, the Huntsman Institute is also a beautiful building. I always feel comfortable and well-cared for there, and I really love the fact that it doesn't feel like a hospital at all. Well, the infusion room kind of does, but not so much. I'll take pictures there next time. The photo above is of the ceiling, and the photo below is the view of the Salt Lake Valley.
And this photo is the PET scan machine. It is my favorite scan to get (I had three MRI's last week. Hate 'em.), because it is quiet and quick. It is also sort of a scary one, because it can find cancer anywhere in your body. It is not very fun to wait for the results. Happily, I only have cancer in one small part of my body, so the PET scan is still my friend!


I often get bored while wandering around between appointments, so prepare yourself for more photos from Huntsman.

Friday, September 05, 2008

Smooth

There was a time in my life (think mid '80s) when I thought it was cool to have unshaven legs. I was dating a guy who saw a crunchy biker girl and he made an offhand comment that it was great that she didn't shave her legs. So I tossed my razors and for a few years there, I was furry-legged.

But even then, I didn't consider for a single moment not shaving my armpits. I mean, really. Who wants fuzzy pits? Not I. And I never understand why those women on Survivor don't at least go in for a waxing before filming starts.

So please don't think I'm compulsive or anything, but I pretty much shave my armpits every day in the shower. Maybe in the winter I skip a day or two, but with the warm summer weather and t-shirts and swimsuits and all, it's just better not to be fuzzy. Consequently, I'm pretty familiar with the geography of my armpits, as I always feel for stubble before completing my shower.

That marble rolling around under the skin of my left arm really surprised me. "Huh!" I thought. "Feels like a lymph node." Well, I did have a sinus infection. Maybe that was it. I'm sure nothing is wrong. I did have a fluttery panicky feeling for a minute, but it passed quickly, 'cause I'm generally an over-worrier. But I did remember from all those magazine articles I've read over the years that a lump in your armpit could also be breast cancer, so I headed to my gynecologist the next day for an exam.

"Probably hormonal," she said, "But if it's there in two weeks, let's get you in for a mammogram. Oh -- and I'm sure you felt this lump, too, in your left breast?" Uh, no. Hadn't noticed that. Felt like the rest of my breasts to me. "Probably just fibrous tissue." Wait and see. But only for two weeks.

Every day, pretty much all day, for the next two weeks, I felt that lymph node to see if it had changed. I tried not to. I tried to ignore it, but it was like a little magnet. One night, I made the mistake of googling "lymphoma" on the Internet. Lump in armpit? That's me! It was the first of many panicky moments induced by an Internet search.

But two weeks later, both the marble and the lump were still there. Unchanged. I headed to Huntsman Cancer Institute for my mammogram. The technician said it went great and I was a terrific patient and my mammogram looked perfect. "But they're going to want to do an ultrasound on that little bump in your armpit. It's probably just a cyst."

By the way, I do enjoy that reassuring kind of talk. I like honesty and directness, too, but in carefully measured doses. I already knew that bad stuff that it might be, so I was glad for all the sweetness and kindness.

The first doctor who looked at my ultrasound tried to be sweet and kind and reassuring, and almost sent me home, but at the last minute, decided it "might be a good idea" to have someone else look at the lump in my armpit. And that doctor's reassurance was like this: "Don't freak out until it's time to freak out." And she scheduled a biopsy.

Two days after that, when the phone rang and it was Huntsman, I breathed a huge sigh of relief. Finally, I thought. I can quit worrying and get on with my life! Unfortunately, the doctor said, she had bad news: I had metastatic adeno carcinoma. That meant that my lymph node had cancer cells in it and it was fighting cancer somewhere in my body, but they didn't know where: could be breast, lung, pancreas, colon, kidney, liver ... who knew? What a sinking feeling I had that day. Never had I thought, I hope it's breast cancer ... but it seemed the easiest of the lot, and thankfully, that's what it turned out to be.

On with the fight now.