The Kind of Day That Makes You Forget That You Have Cancer

I love days like this.

After a lazy morning, my folks, Eddie, my nephew Connor, and I went berry picking at local farms. We picked 16 lbs. of raspberries and about 16-7 lbs. of marionberries.

After working up an appetite, we went to China Buffet for lunch. The boys enjoyed it as did we.

Then, my folks took Eddie and Connor to their house to babysit while I went into my office for awhile. I finally finally filed away this pile of files. Answered a couple of emails. Printed off some documents. My mom, in the meantime, cleaned all the berries and packaged some up. We plan to take some of our haul to Alaska for various people (Toni, Gemma, Toni's mom, and Charlene). We hope to carry some in our take-on baggage for Becky. I have never made freezer jam (or any other kind of jam for that matter) and hope to do so this week? (Remember, I'm not really the domestic type.)

I picked up Eddie and Connor and went home. Eddie's dad picked him up; Scott and I took Connor back to his house along with some berries for their consumption.

Scott and I then came back home, picked up some work, and headed to Big River, to eat dinner on their patio, have a beer or two, and do some work. I did a final read-through of an article that's been accepted for publication; Scott worked on his SOAP chart for massage school.

Our waiter (another Scott) happened to be married to Annalisa, who is an incoming master's student in Anthropology, who will work with my colleague Missy. Missy and her husband Andy named their baby girl Ninkasi, the Sumerian goddess of beer and the name of a brewery in Eugene. Scott (my boyfriend) and I drank Ninsaki Radient with our meal.

Funny coincidence, huh? To have a waiter whose wife was going to study with Missy, whose daughter is named Ninkasi, which was the name of the beer we drank with dinner. A full circle kind-of-thing.

Forgot all about the lung spots and the cancer today. I mean, I took my meds and herbs this morning and had the Xeloda after lunch. I didn't feel any real side effects today - perhaps a bit of light-headedness but it didn't last. But it was a perfect evening - hanging out with Scott, having some casual conversation with both Scotts, a good beer, a beautiful evening (sunny, blue skies, in the high 70s), good dinner, AND got some work done.

A girl can't ask for anything more, right?

Love it! No mention of cancer. Just living life. Enjoying the weather, picking berries, spending time with family, eating good food, getting some work done.

Why can't all days be like this? Love ya all!

Back to My Normal Self

On Sunday, I continued my plan of no Xeloda on the week-end - it was a fairly busy day. I was able to do some shopping and then I helped Scott scrape the last bit of grout off the tiles on my mosaic. My softball game was canceled and so a few of us went to Clod's to hang out. All in all, a good evening.

With my mosaic, we need to put an edge around the outside of it (what does one call that?) - someone suggested a thin piece of wood soaked in water so that it'll bend - and then there's a few places where it needs to be regrouted. And, yes, this time we will wipe the wet grout off the tiles before it dries! Then, put a sealant on the whole thing. And, then we put it out on the pedestal. Yay!

Yesterday, I was lazy in the morning. Then, my folks picked up Eddie as they were running errands and then I went to work. I sat in my office manager's office chatting with her about budget and accounting stuff and kept yawning and yawning. I then went in to my office, wrote some emails, got lunch, and worked on editing down an article that's been accepted for publication. Then, it was time to pick up Eddie, we ran an errand or two, and back home. I played v-ball last night (badly but fun), then picked up my nephew after his soccer practice. He and Eddie played all evening. Scott and I hung out and watched a movie, interspersed with The Bachelorette.

I took my Xeloda right with lunch. A couple of hours later, I experienced some brief dizziness and perhaps a bit of an unsettled stomach, but then it went away. It helped that I came home and ate something (for some strange reason, Xeloda makes me want to eat something sweet). I have also been thinking about that attitude adjustment - not dreading the Xeloda but rather welcoming it for what it's going to do to the cancer cells. Then, I was fine the rest of the evening, if a bit tired.

What's on tap for today? I think we are all going out picking berries (blueberries and raspberries). We means my folks, my nephew, and my son and I. Mom wants to bring them up to Alaska with us this Saturday. Then, off to my office to work a bit.

It's sunny again today - so it should be a good day!

Week-end Update

I keep forgetting to let folks know . . . I saw Dr. Kenyon on Friday and we looked at the CT scan and compared it to the one from April and I indeed saw the larger spots on the lungs.

We actually didn't talk about much. He asked what side effects I experienced on Xeloda and on Tykerb. In the end, he thought that I should go back on the full dose of Tykerb and as much of the Xeloda as is comfortable. I'll get another CT scan in three months. In the meantime, we'll monitor the tumor markers and the lymph node under my left armpit.

I took one Xeloda after lunch every day from Tuesday to Friday. I felt slightly nauseous and slightly dizzy every time, within an hour to two afterwards. I also get moodier - the nauseousness is frustrating. I also got pretty mad at Scott on Thursday night - it was a minor thing but I realized the next day that the anger was misdirected. I am angry about the cancer and there was also a couple of things going on at work that were annoying. Scott, unfortunately, got the brunt of it.

I also do feel more tired on the full dose of Tykerb.

My hot flashes are a bit worse.

So, I decided that I'd give myself a little vacation from Xeloda on the week-ends.

I had a busy day today. Went to the library book sale - Mom found a book called "Spaghetti Eddie" which fits Eddie perfectly - then grocery shopping, then back home and packed up to go to a former student's daughter's three-year birthday party (holy cow - how time flies!), then Scott, Eddie, and I went to the Philomath Frolic. Eddie got to ride the rides - we went into the Fun House with him and then Scott rode the Yo-yo with him twice. It was a bit chilly (high 60s, maybe 70) at the birthday party - it was outside at a park - and then by the time we got to the Frolic, the sun came out and it was quite pleasant.

I meant to invite Eddie's cousin over to stay the night, but time got away from me. By the time we got home to have dinner, I was tired. Scott is tired. So, we're all just taking it easy.

I took Eddie to the pool yesterday. I even got in myself.

I saw my plastic surgeon's wife who is a nurse on Thursday. She gave me another laser treatment to the TRAM flap scar which is kinda thick (about 1/4 inch) and feels like a cord. Then, Friday, I talked to his nurse on Friday about getting a tattoo for the areola/nipple. Basically, everything's healed up enough to do this. So, I may do this in mid to late September . . . I would like to maybe get a tattoo on part of the TRAM flap scar, but they say to wait until about a year after surgery.

So, I've been trying to take it easy - both last night and tonight. I colored mandalas both nights.

The plan is in motion. We'll see what happens next month. Although I don't like taking Xeloda, the fact that I experience side effects means that it's doing something. I choose to believe that it's doing what it's made to do - kill those flippin' cancer cells.

In one week, I'll be in Alaska! Yay! I saw several people who worked with me on the King Island project today and several of us get to go back at the same time. We're all excited! It will be soooo neat to be back among many of my cousins and other relatives! My mom is excited as well.

And, oh yeah, an OSU student that I knew from the Longhouse was at the birthday party today with her little one-year-old boy. I went to his birthday party a few weeks ago . . . and held him a lot and fed him apple cake. The week before his birthday, I got to hold him again during a baby shower. Today, he came right to me - he kept wanting me to get a balloon for him. Later I took him the park. Then, it was time for me to go and the little guy didn't want me to leave! His mom was holding him and then he held his hands out to me and then cried when I didn't take him! He's such a cutie - just adorable, big brown eyes, big eye lashes, and lots of hair.

It's nice to be wanted by such a little cutie! : )

A Good Busy Day

I had class this morning, then met with my grad assistant. Then, I met with Dr. K. He was happy about the tumor marker and then I came clean and told him that I hadn't had Xeloda for about 6 weeks.

Then, amazingly, he said, well, I guess we could think about taking you off some of the meds. Before he does that, though, he'd like to know if there was anything going on of concern - he wondered if Dr. Havard could take a look at my liver while he's got me opened up. Not sure if he's going to follow up on that. But we talked about me having a CT scan after I've recovered from surgery, around April sometime.

In the meantime, I told him that I'd be okay with going back on Tykerb two weeks post-surgery. I stopped taking Tykerb last Friday, because in general, it's better to be off the chemo two weeks prior to surgery.

Work has been busy - I'm not only prepping my daily classes, but I'm starting to plan out the powerpoint lectures for several classes while I'm home recovering from surgery.

In the meantime, I'm giving the first mid-term in one class tomorrow. Mind you, I've been posting my powerpoints for almost every class. I generally just give broad general outlines in them, but the students want them to study. I feel like I'm spoon-feeding them information. I mean, do your reading, listen to the discussion and take notes and you should be fine. It's not rocket science, here. I thought I'd posted them all, but a student tonight asked me to "post the missing powerpoints". I forgot only one of them. He looked for them around 5pm. The exam is at 10am tomorrow. I don't have them with me. They're in my office computer. So, he's just going to have to wait. I suspect that he's not done the reading. Sigh.

Okay, that's my rant for today.

Afterwards, I went to a community dinner at the Longhouse and then played volleyball. We lost the match - 21-15 and 21-16. We beat ourselves. We only had five players. Bummer deal. We're now 1 and 3 for the season.

And this month's tumor marker was . . .

Drum roll, please!!!


15.4!!

Now, that is the CA15-3 tumor marker. That's the 7th month where that marker has been below 20!

Very cool, huh?

The history is:

Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL

Pretty stable. We like stable tumor markers.

Now, don't tell Dr. K., but I haven't taken Xeloda since the week before Christmas - around Dec 19. So, I have about 5 or 6 weeks where I haven't taken one of the tumor drugs and it doesn't appear to have affected that number.

That's even cooler!

Zometa and Zoladex Tomorrow

It's official - I will start Zometa tomorrow. I haven't had a chance to properly discuss this with my doctor as I don't see him for two weeks, but I have done enough on-line research to know that it's probably going to help. I had already scheduled my Zoladex appointment (that's the abdomen injection that shuts down my ovary production) for tomorrow, so I called my doctor's office and asked him if he also wanted to order the Zometa at the same time.

As I understand it, Zometa helps the bone-building process since caner that's metastasized to the bones either takes out or uses some parts of your bones (not sure exactly what the process), giving you less bone mass, or else, it adds extra bone to your bones. But in any case, both tend to weaken your bones and make you more prone to fracture. This helps makes your bones stronger.

There was apparently also some research that says that Zometa helped premenopausal breast cancer patients by making it somewhat less likely that cancer would metastasize to the bone. The reports say by 36%, but it had to do with a study of 1800 patients (I think), in which half got Zometa and half didn't (all were premenopausal, early stage breast cancerpatients). 6% of those on Zometa ended up with bone metastases versus 9% of those who didn't get it. 6% of 900 is 54 patients with Zometa, versus 81 patients without Zometa.

There are side effects (fever, nausea, dizziness, bone and joint pain), but the average percentage of folks who did were relatively low. So, it seems like a good thing to do.

This brings my total western medicine drugs up to four:
Xeloda - an oral chemotherapy
Tykerb - an anti-Her-2-neu targeted therapy
Zoladex - shuts down the ovary production
Zometa - builds bone

And, for acupuncture, I am on the following herbs:
5-mushroom blend - three of which have been scientifically shown to have anti-cancer properties
Paris 7 - a variety of herbs that fight toxic heat with one that may have anti-cancer properties
Gynnostemma - a variety of herbs that helps support your blood and help one of your energy systems

I also take turmeric in pill form (which has helped against melanoma) and also melatonin which helps sleep and which has also been shown to be affective against breast cancer cells in mice.

Take that, nasty cancer!

Today's Gratitude List

Today, I heard from a couple of friends (Stan and Heather) via email and both messages were very much appreciated, so I just wanted to say thank you! They offered all kinds of support! My friend Tammy sent me a couple of jokes and then I invited myself up to Tammy's and Rick's for dinner. I really am fortunate to have that kind of support. Scott also listened to all sorts of things I had to say - thank you to him, too!

Well, I also had some jewelry resized and put into new settings a few weeks ago and I had a chance to pick them up today. I've been friends with Carol for as long as I've been friends with Tammy and Rick and then Carol ended up marrying Connan a few years ago (wow - almost 6!!) and for awhile, Carol and Connan and then Connan's brother, Sean, and his wife, Elisa, played on our softball team. Sean and Elisa own Olufson's Designs (a jewelry store) downtown and they are the ones I asked to work on my jewelry. I really love the work that was done! The jewelry turned out nicely, so that's another thing to be thankful for!

And, it's sunny. So, thank you everyone for being there!

Also, today at counseling, I told her about how I often forget to take my evening Xeloda dose. I remember a few months ago that a couple of other bloggers would mention how they took reduced doses or would forget. I didn't understand it because I've always been a good patient and done what I had to do - took those pills, etc.

But you know, now I understand why this happens. I told my counselor that not taking my night-time Xeloda is like having a mini-revolt. I get tired of always being a good patient. I figure I'm doing about 10 others things that more than make up for the missed doses. I'm entitled to be rebellious once in awhile, right?

Treatment Updates

I still haven't started radiation treatments yet. I'm not all that eager to start, but I will do them because there are still a few hard nodules under the skin, which are presumably little tumors growing up from the lymph channels. I may, however, not do the full six weeks, depending on how my body responds to them. When I asked the rad onc about doing less to begin with, her reply was that it would be 3 months before she knew whether or not the radiation treatments worked - in other words, we could do less treatment, but since it takes awhile for everything to settle down, we wouldn't know whether or not there is still cancer there for 3 months. And, if it didn't work, then I'd have to do the radiation treatments again. Medical science just doesn't know or hasn't studied whether doing less would be just as effective as doing more. So, they stick to the standard treatments.

But my thinking is that the medications I'm on - Xeloda and Tykerb - have or are sensitizing the cancer and it will be easier to kill with radiation. I also take a five mushroom pill (3 of which have anticancer properties), melatonin (which has been shown to stop and/or reduce breast tumor growth in mice), and turmeric (shown to be effective for skin disorders and studies have shown it to stop tumor growth in melanoma). So, I guess I think doing a little bit of radiation will tip the balance in my favor - kill the suckers - and then the meds will be able to do their work.

The open skin wound continues to heal. I've recently started putting turmeric paste over a larger area than the original open wound - the skin over the implant was dark - and now the whole area is weeping more. I need to change the dressings twice a day. The way I see it is that my body is expelling the cancer through the fluid drainage.

I don't have as much lymphedema over the right ribs as before - I do some lymph massage everyday - and interestingly, the whole area is fading again. The area was getting redder AND more swollen after I painted my bathroom, so my guess is that a lot of redness is from the lymphedema, not the cancer. But as I said, there are a few little nodules that are little tumors, so I will submit to radiation, too.

Have a good Tuesday everyone!

Side Effects Update

Today is Day 18 on the turmeric experiment. I really believe that the open wound is healing. My ob/gyn thought that it only looked superficial on Friday. Today, it looked like the outside layer of skin is trying to form. I see Dr. Kenyon on Wednesday and will see what he says. I also believe that part of the red rash is fading, although there is one small area that wants to stay red.

On the other hand, I am starting to see more symptoms of hand-n-feet syndrome. The tips of my fingers are cracking, but mostly, all of my fingers are really red and I can no longer tolerate hot showers or washing dishes under hot water. Last week, after walking a lot, I ended up with painful blisters on the balls of my feet (under some small callouses, wouldn't you know?) and it hurt to walk. So, I took myself off of Xeloda on Thurs and Fri in order to let my body recover. My feet seem to be doing okay now, although I can't stand for too long these days.

All in all, though, even with these complaints, my side effects are tolerable. I continue to get good sleep and am staying active with both work and house projects, and helping Eddie at school. Hanging with friends when I can, too! I painted my bathroom this week-end - it's a little wild, but I think I like it. I will post pictures in the next couple of days!

Outhouse Stories

Carver, over at http://carverblog.blogspot.com/2008/04/rain-at-end-of-downspout.html, had a post about the drought over in the Southeast, and her efforts at conserving water. I asked her a question about how she collects the water she runs in her shower before it gets warm, and then our comments began to revolve around potty humor - specifically my recounting various outhouse stories that I've heard in the course of my career.

I am a cultural anthropologist whose work is based in Alaska, most specifically, in the Bering Strait region. Some of the areas I've been to are very remote, without running water. My colleague, Loren, is an archaeologist who also does work in fairly remote areas. Here are the stories:

When my science and community crew worked on King Island, a very remote place, our logistics crew put in some porta potties, but apparently it was the kind that you have to use with a certain chemical - that quickly converts the waste into solid blocks which then are biodegradable. But they were also vacuum-powered, too, and the joke told by the crew was that they were afraid they'd get flushed away, too!

When I was a grad student in Fairbanks, a lot of students in my cohort lived in cabins outside of town. Many of these cabins had electricity but no running water, so they used outhouses that were placed a little ways away from the house. I remember walking in below-zero weather to an outhouse during a dinner party. The joke there was that it was better to have a styrofoam toilet seat because it didn't freeze and it didn't feel cold when you sat on it! I remember a funny story when grad student told - her outhouse was fancy because it had two holes cut into the bench to sit on. She said that she had to switch the seat from one hole to another because the waste had frozen into a tower so tall that it was almost up to the level of the hole! Imagine that - a frozen tower of waste in an outhouse!

A lot of people in my community have cabins on King Island land on the southwest Seward Peninsula. it's about 40+ miles from Nome, with no running water or electricity. Several have been gas-powered generators so that they can watch movies on their VCR or DVD players there. My uncle even rigged up a tank to catch rainwater which then runs to a spigot inside the cabin.

Anyway, about 18 months ago, there was a strong fall storm that caused a storm surge (bigger and bigger waves) to come ashore. It carried away my cousin's outhouse!! They had to go by 4-wheeler about a mile inland to fetch the outhouse - the building itself was still intact. Imagine that! Someone might ask, "hey how was your day?" "Well, I had to tow my outhouse today!"

Which reminds me of my colleague's story. Loren has an archaeology field school occasionally on the Salmon River in Idaho. A couple of years ago, they had to tow their outhouses to town and get them serviced, but the road from their camp to town involved a long, steep uphill climb. They got to the top of the hill and realized that one of them fell off the trailer, so he sent his students back down the road to find it. Luckily, it was one that hadn't been used, because it had rolled some on its side!

The "hazards" of fieldwork!

So, today looks like it will be a good day! They say it will be sunny and 72 degrees out there. I got another good night's sleep, too. Yesterday, I didn't sleep well the night before - my partner and I decided to break up (differences in how we approach things like parenting, planning for future events, being proactive or reactive, plus bigger issues like my cancer and issues he's got to work on at his end) - and then I think I started to get overloaded on Xeloda as I felt slightly nauseous all day (I'd gone back up to 3 in the am and 2 in the pm, where last week, it was 2 and 2). A good night's sleep and sunshine really help, though. Have a great day!

My Xeloda by Heather Kenagy

Hey everyone,
Remember awhile back when my colleague said that I should compose a song entitled "My Xeloda" to "My Sharona" music? Well, one of my friends took me up on it! Heather Kenagy, with the help some friends who has a studio, composed the following song. Scroll down to click on the widget to hear Heather singing! She's done a wonderful job! It's just too funny and also well done! Thanks again, Heather!

Oooh you make my fingers numb, fingers numb
My hands they used to be just fine, Xeloda
Now I have insomnia, insomnia
REM sleep's fallin' way behind, Xeloda
Have the little pills in my hand
take them every day; wanna throw them out
throw them up, throw them all away... My my my i yi WOOOO
M M M MY Xeloda

Tried to have some viniagrette, viniagrette
You gave me sores on my gumline, Xeloda
Sores appearing everywhere, everywhere
Can't eat anything with spice, Xeloda
Have the little pills in my hand
take them every day; wanna throw them out
throw them up, throw them all away... My my my i yi WOOOO
M M M MY Xeloda
M M M MY Xeloda

Acne keeps a breakin' out, breakin out
My chin looks like a big stop sign, Xeloda
Even though you help me out, help me out
Why couldn't this have been benign, Xeloda?
Have the little pills in my hand
take them every day; wanna throw them out
throw them up, throw them all away... My my my i yi WOOOO
m m m m m m m My my my i yi Woo
M M M MY Xeloda
M M M MY Xeloda
M M M MY Xeloda
M M M MY Xeloda

***GUITAR SOLO***
Isn't it cool? Thank you so much, Heather! I love it!
Dee

Words © Heather Kenagy

Managing Side Effects

Currently, I am taking Tykerb, five pills every day. I also take Xeloda, but now my dosage is 2 pills twice a day, Monday to Friday, with the week-end off. I also had my Zoladex injection in my abdomen. One major side effect seem to be facial breakouts caused by all three, but Tykerb gives me little white zits while Xeloda gave me big angry red ones. I also have had some trouble sleeping, again caused by all three - Zoladex gives me hot flashes which wake me up and the other two have "trouble sleeping" as one of the side effects. I also had a bit of nausea. I think I have some lymphedema around my shoulder blades and my ribs on my back. This week, I also started getting some dry, cracked skin, right at the edges of my fingernails. And, finally, I get mouth sores, bleeding gums, and red sensitive lips.

For breakouts, based upon what my acupuncturist says about the level of "toxic heat" in my body, I started using an aloe vera gel on my face. It cools the skin and also has antibiotic properties. Then, I use a little bit of Clearasil on a breakout, but not all over, because when I did, my skin around my mouth and chin really starting drying up. I had that awful situation where my skin was flakey but I was still breaking out. So far, the gel and the small bit of Clearasil is keeping the red angry zits away.

For sleeping, I started taking melatonin. I'm up to 8mg/night and on that dosage, I've averaged about 6-7 hours/night. So, for the last week, I actually feel normal and have energy. People tell me I've been looking great (considering) this week and I do feel great. Thank goodness! I hate feeling tired. Also, I do a few things to quiet my mind like deep breathing and massaging my feet with lavender oil.

For nausea, I saw my acupuncturist and since then, my nausea symptoms have been almost nonexistent. Yay!

For the lymphedema, during my massage last week, the therapist did some lymph massage and that seems to help. I found out that lymphedema post-mastectomy is not all that uncommon. I had some slight swelling on my back that, when pressed, felt pretty tender. The massage therapist, Mary Jane, also said to wear under armor - tighter t-shirts that you see athletes wearing that do some slight compression. That slight pressure helps move the lymph fluid, since there is nothing pumping your lymphatic fluid around like your heart. Not sure how your body helps it move, maybe through the daily constriction and stretching of your muscles, but compression and massage help it flow. That's why they see things like tai chi or yoga help.

The company that manufactures Xeloda gave me a free tube of "Udderly Smooth" for the hands and feet. I started using that pretty religiously on the dry skin around my fingernails a couple of days ago and that seems to help, too.

And, finally, for the irritating mouth sores, my acupuncturist suggested swishing with aloe vera juice because of its cooling properties and also for its antibiotic properties. She also said that drinking peppermint tea also helps cool things down. What I've found is that the aloe vera juice help keep the sores from getting worse, but they didn't disappear. After drinking the tea the last two nights, I found that any mouth sores that I felt developing disappeared. Also, my whole mouth felt hot, but I could actually feel this wave of coolness in my mouth when drinking the tea. I've had peppermint tea before and I never had that feeling before, but now I can really feel it.

Anyway, just wanted to pass on some strategies for helping with side effects like this . . . they are relatively minor and now that they are coming under control, I feel good and am continuing to see improvement! Yippee! Thanks to everyone who suggested these strategies. Combined together, they do wonders for my mood! Happy Spring Break!

Doing Okay, Despite Three Needle Sticks

I am beginning to get more sleep these past few days - I've had at least 6-7 hours in the past 4 or 5 nights and I even had one night of 9 hours. The sleep does wonders for my mood and energy. I have upped my dose to 8mg of melatonin - studies indicate that 75mg can be taken daily without any ill effects, other than feeling drowsy! But that's the point, right?

I also had my Zoladex injection today - that's the pellet that goes into my abdomen and is slowly released over a 28-day period. It shuts down my ovaries. No problems, there. But today was also a day for blood to be drawn for lab tests. Dr. Kenyon wants them drawn every two months. I warned the nurse, Joan, that my veins on the left arm are hard to stick. She found out the hard way. Anyway, I have three needle marks in my left arm. Sigh. That's a long-term side effect - scarred veins- of the adriamycin and cytoxan from five years ago. And, they wonder why my blood pressue goes up whenever I have to have my blood drawn.

I also started Xeloda again this morning. So far, so good. Still seeing improvement in the skin on the right side.

But, I may have some lymphedema from the surgery. I didn't realize until about 2 weeks ago or so that my back - around my shoulder blades and ribs - was tender until Scott tried to give me a back rub. He put a little bit of pressure on that area on both sides and I just jumped. I ended up concluding that I may have some lymph fluid backed up from surgery. I checked with my friend, the surgical nurse, and she said that there shouldn't be any pain from the drain areas, although they are still not completely healed up. And, Debbie, my friend Tammy's sister, who works at the hospital, said lymphedema on the back is a side effect post-mastectomy. I will mention it to Dr. Kenyon when next I see him. In the meantime, I had a wonderful massage from Mary Jane at the Heartspring Wellness Center. Mary Jane (who my friend Don just raved about the other night at cards) did lymph massage on my back, after Brodie (my acupuncturist) rubbed it with a scraper implement last week. I think it helped. Mary Jane also said to wear Under Armor (you know those tight shirts that you see football and basketball players wear under their shirts?) to try to help the lymph fluid move a little bit better. So, I found some of those at Joe's (still G.I. Joe's to me - I know they are getting away from the military connotation of G.I., but maybe if they kept the initials but made them stand for something else like "Game Innovators" or "Got Implements", it'd be easier on those of us who grew up with "G.I. Joe's"). We'll see how they work!

Oh, I forgot to wear green today. Luckily, I had a beaded bracelet with green on it that works. Happy St. Patrick's Day

Ah, my Xeloda

I'm doing okay on the Xeloda. Had a brief stint of light-headedness yesterday but overall the nausea seems nonexistent. I think I figured out what exacerbates the nausea and what doesn't. But, I already started getting mouth sores - on the inside of my cheek and another on the tip of my tongue and some of my gums are bleeding again. I had a salad last night with vinaigrette and although not too spicy, it did burn my mouth and my lips. Swished with the aloe vera juice and that seems to help. The tips of a couple of my fingers are tingling and/or getting number. So, I'll call my doctor today and just ask him about decreasing my dose even more.

Slept okay, although I woke up early. I think the melatonin is helping. The skin rash and the skin mets continue to slowly disappear! So, I can't complain too much. And, more of my daffodils bloomed yesterday! Yay!

Back on Xeloda

Today, I started taking Xeloda again, although at a slightly reduced dose than last time - I take 3 in the morning and 2 at night. I really loved last week, when I didn't have to take it. I felt much better since some of the nastier side effects - the inflamed mouth, red zits, and slight nausea - were not present. On Tykerb, I just seem to have little white zits, and of course, trouble sleeping.

So, I stalked up on sweet-tasting carbs to help me counteract the nausea, as well as some diet Sierra Mist. I'm still using the aloe vera gel on my face and I plan to swish with the aloe vera juice tonight to maybe fend off the mouth sores.

I have an acupuncture treatment this week, which I'm sure will help me cope. But, so far, so good. No nausea today, just thirsty, so I'm trying to drink lots of water.

I was depressed earlier today - because I knew I was starting Xeloda again and also because I didn't sleep well last night. I'd slept well the night before, so I hoped that I would sleep well again. Being tired really does affect my mood.

I like being productive - I don't usually like to sit around watching TV all the time, especially when there's stuff to do around the house. I really wanted to be lazy, today, though. But I hadn't vacuumed in a couple of weeks and the cat is beginning to shed more hair, so I really wanted to get it all cleaned up.

I did get in a good walk today - it was gorgeous here - partly sunny and 60 degrees. The daffodils in front of my kitchen window started blooming yesterday and I saw some little pink buds on the flowering plum tree out back today, too. That's always good to lift one's mood!

Visit with My Oncologist

Yesterday afternoon, I had an appointment with my oncologist, who wants to check in with me while I'm on Xeloda and Tykerb. I had several questions for him, which were, in no particular order: 1) adjusting my dose while on Xeloda; 2) what to do with the skin mets; 3) using melatonin for sleep; 4) his thinking about radiation; and 5) insurance approval for Xeloda and Tykerb.

Regarding Xeloda, he gave me permission to adjust my dose of Xeloda. His preference was for me to take it Mon to Fri and then off on the week-end (something about biochemical processes), but I told him that I am really enjoying my week off of it. So, for now he was happy with me trying to take only 5 Xeloda each day while I'm on it, instead of 6. He was fine with me skipping the last dose because of the mouth inflammation. He also mentioned something interesting: apparently, women in Europe are able to tolerate 8 or 10 Xeloda each day, while in the U.S., women seem to only tolerate 6 each day. Researchers aren't sure why, but are looking at environmental factors, such as our diet, or maybe what's in our water or environmental contaminants.

Regarding the skin mets, there were 2 or 3 small areas (i.e., a few mm long) that started to bleed a bit. They were around areas that were pretty dry, so he said to use a small bit of aloe vera gel to moisten it up. By moistening it up, we can keep them from getting larger. He definitely saw improvement - he last saw me on Feb 22, so he saw the improvement over a 12-day period on these meds. So, my eyes weren't deceiving me!!!

He didn't know much about melatonin so I mentioned to him the studies I found related to it. I posted about it last Friday. The thing I forgot to mention is that there are some studies, I think so far just done on rats, that show that melatonin stops breast cancer tumor growth. He wasn't able to suggest a dose. I started with 2mg a night (about 6 or 7 times more than is usually used physiologically) and it didn't seem to help. I went up to 4mg on Tues night and I couldn't even get to sleep! I went back to 2mg last night and slept for 4 hours straight! Yippee. I think I got up to another 3 hours the rest of the night, but I woke up a couple of times and stayed awake. I found some articles on the internet that show that one can take as many as 75mg/night without ill effects, other than feeling sleepy and drowsy. Another article said that elder insomniacs had better sleep with about 0.3mg. One site suggested 40-50mg/day if you are a cancer patient. So, I will monkey around with the dose and see what works. Liz, over at www.lizkreger.com, told me that she uses 5mg/night and that works for her. My oncologist's nurse said that a 3mg dose works for her.

Regarding radiation, my oncologist thought that my reasoning was sound in terms of putting off radiation until I really need it. He said that if the meds seem to be working on the skin rash and the skin mets, then radiation (a one-shot, local deal) wouldn't be necessary. We also assume that if it's working on the skin, then it must be working throughout my body. Yippee! again! If we continue to see improvement, then once it's cleared up, I can go back to getting "pumped up"! Cool. It's kinda weird being half-filled.

He also said that insurance approved the Xeloda and Tykerb, without any extra say-so on his part. My thinking? That giving me Tykerb/Xeloda is cheaper than having it administered via IV, because not only do you have to pay for the meds, but also for the trained personnel giving the meds. Taking pills works for me! Better than having a port or having my arm/hand stuck with needles every so often!

So, yep, it was a good visit. I took my folks out to dinner to celebrate!

My Xeloda!

I was chatting with my colleagues, Joan Gross and Loren Davis, about the side effects that I experienced this week-end related to Xeloda. You know, the inflammation I felt around my mouth and the angry zits on my face. My face seems almost normal now and so does my mouth. I am so glad to be off the Xeloda this week!

Loren, who has one of the quickest wits that I know, said that I should compose a song to the tune of "My Sharona!" Remember that song? Here's a first stab at it.

Ooh my little orange pill, my orange pill,
Hate to take you twice a day, Xeloda!
Ooh you make my mouth burn, my mouth burn.
Hard to keep the sores away, Xeloda!
I can't wait to stop, give it up,
All the zits, from these drugs,
are the pits. My my my i yi woo. M M M My Xeloda . . .

I can't quite get that next to line right. Does someone want to help here? Does any one else have ideas for verses two and three? I actually had to google "my sharona lyrics" in order to figure out Verse #1. It's kinda fun . . . at least, I've always enjoyed making up silly rhymes.

Thanks, Loren!

Limitations of Medical Tests and Chemo Toxicity

The life of a cancer survivor (because while I'm a patient, I'd rather be thinking of myself as a survivor) is never dull. I mean, no one's life is ever dull, but here in Cancer Land, it seems that there is always something going on. This week-end is a case in point.

I had an echogram of my heart last Monday, ordered by the cardiologist, who thinks that they are more accurate than MUGA scans for estimating the ejection fraction (EF) of your heart. (See my post entitled "I'm a Medical Puzzle OR Both Good and Bad News".) Dr. Kenyon called me Friday afternoon with the results. According to the echogram (which is an ultrasound of the heart), my ejection fraction is 65! Right up there in the normal range. A strong heart, etc.

So, Dr. Kenyon called the radiologist to ask about the MUGA results, which was 41 (below normal). The radiologist said, "It's possible that I underestimated it". Then he called the cardiologist, who said, "It's possible that I overestimated it".

Will this make a difference in how I'm treated? If you recall, the low EF was the grounds for not giving me onto Herceptin and putting me directly on Tykerb, a relatively new targeted therapy. Herceptin is given via IV and Tykerb is taken as five little orange pills every day.Dr. Kenyon said that, no, we'd continue with the current course. He even consulted with a breast cancer specialist who was down here from Portland. That doctor told him that if Tykerb seems to be working for me, then to keep with it, especially since it doesn't seem to affect the heart as much as Herceptin. I think (my opinion as I'm sitting here typing) is that I do have an increased risk of heart damage, because of the adriamycin I took before, so why push it? In other words, go the route where the long-term side effects may be lessened, which seems to be Tykerb. Okay. Fine with me.

Dr. Kenyon did say something along the lines that there are limits on these tests. I've decided that I'm going to average the two results, which gives me an EF of 53, which is normal. Cool. And, it seems that I won't have to worry about long-term heart damage while I'm on Tykerb.

On to chemo toxicity. Last week, on Tuesday, I started noticing mouth sores. My acupuncturist felt that my body was trying to rid itself of toxic heat, which was manifesting in the mouth sores, the dry skin on my face, how I felt thirsty and dehydrated, etc. I'd also started breaking out, first, with little white pimples, which is what Jeanne Sather in Seattle has had to deal with while on Tykerb. But the past few days, my chin and nose really started to break out with what I call larger, red, angry pimples. Then, Friday night and through Saturday, I noticed that my gums and my lips started to feel inflamed. One of the other moms of a student in Eddie's class brought me enchiladas for dinner on Thursday - I had some on Friday, too. (They were delicious, by the way!!! Thanks, Norma!) On Friday, when the enchilada sauce got on my lips or my gums, boy, it felt like those tissues were going to catch fire! They felt inflamed all through Saturday, even with the pizza I had for lunch. My acupuncturist did tell me to stay away from spicy foods. Now I believe her! I'm not sure I'd say it was painful, but it sure didn't feel good. So, I swished with the aloe vera juice several times last night, to cool things down. I'd also started putting aloe vera gel on my face - to cool things down, keep the skin moist, and hopefully the antibiotic properties of the gel would help the breakout.

I also decided NOT to take the very last dose of Xeloda for this two week period. (I take Xeloda for two weeks, then I'm off a week; I skipped the last dose on day 14.) I figured that my body was trying to tell me that I'd had enough. Guess what, I woke up this morning, and while I still had the little whiteheads, the red, angry, bigger pimples weren't there. My mouth and my lips don't feel inflamed and there's only one sore remaining. It was the right choice. I'll talk to Dr. Kenyon about dosing when I see him on Wednesday.

Acupuncture and Chinese Medicine

I saw my acupuncturist today. Her name is Brodie Welch and she runs Life in Balance Acupuncture here in Corvallis. She's the one who has prescribed some herbs and a five-mushroom pill for me. It was while using the five-mushroom blend (three of the five have anti-cancer properties) that I noticed that the red rash on the mastectomy area stopped spreading.

I'd heard previously that acupuncture can help with nausea, but I didn't seek out an acupuncturist for the chemo treatments five years ago. I told Brodie that I have had a few episodes of nausea with Xeloda and Tykerb, but that they usually went away if I ate something - usually something bland and sweet (those Girl Scout Trefoils are great for that!) - and if I made sure to drink lots of water.

In addition to the nausea, I told her that some of the other symptoms I have are: feeling thirsty and waking up in the middle of the night with a dry mouth, a couple of mouth sores (nothing that interferes with my eating), hot flashes, other menopausal symptoms like vaginal dryness (sorry for being explicit, gentlemen!), and acne. Her interpretation: that I have a lot of toxic heat in my system between the cancer and the chemo drugs and my body is trying to let it escape. She suggested that I drink peppermint tea - it has a cooling effect and can help with nausea - and that I swish with aloe vera juice for the mouth sores, both because it has a cooling effect but also antibiotic properties. I decided to try the aloe vera gel on my face for those same reasons. I'll let you know how that experiment works.

But amazingly, since the acupuncture treatment yesterday, I haven't had any nausea! My stomach and digestive system feel just about normal. Although I had a little bit of a pastry with my toast (since I figured I needed more in my stomach when I took the Xeloda), I don't feel dizzy or nauseous. She also put these carrow (I think?) seeds on my ear, at a few acupressure points. They are taped onto the ear in places that relate to various energetic parts of your body - the liver chi, the stomach chi, the kidney chi, I think one for my lower back (which has been sore since I heard the diagnosis). She also gave me magnets to put onto stomach/nausea pressure points above my wrist. I asked her how they work and she said that the pressure reminds the body to dial into (divert healing energy?) that system to relieve the nausea. Two of the seeds do kinda hurt when I press on them, so maybe that means that they are working to help with the nausea and maybe even the worry and tension.

I bought a book on acupuncture yesterday so that I can understand the whole system better. As an anthropologist, I am interested in how different cultures conceive of health and healing, so I find it fascinating. It's helping, that's all I know, and I want to know why!

Have a great day! I saw this really nice large rhododendron bush blooming on the quad near the MU on my walk to campus today. Big pretty pink blooms! Yesterday, while walking to the acupuncturist's office, I saw lots of miniature daffodils, dwarf irises, crocuses in all colors, and this little white flower that looks like a blue bell. I love spring! It was warm here, too, yesterday - partly sunny and 63 according to my car. Yay!

Skin Mets, Puberty, and Seeing is Believing

I know that I have written earlier about this red rash (medically known as erythema) that I saw spreading on and below the tissue expander on the right cancer side, within which was a small area of "peau d'orange". I found out on February 1, after a skin punch biopsy, that it was cancer and it was spreading via the lymph channels in my skin, causing inflammation and hence the redness. I started monitoring the spread by marking the outside of the red area in a blue marker.

Well, I noticed at the same time that there were a couple of small pimples in the "peau d'orange" area. I monitored them, too. I got one or two more. Then, I noticed that two of the pimples seemed to be growing bigger. While I waited to hear about whether or not insurance would cover Xeloda and Tykerb (see http://deeupdates.blogspot.com/2008/02/waiting-again.html), and while I waited for the CT and bone scan results (see http://deeupdates.blogspot.com/2008/02/well-crap.html), I tried to remember to ask about these growing pimples in the "peau d'orange" area. When I finally talked to Dr. Kenyon, I forgot to ask about the skin changes. So, after starting the meds and finding that I was doing okay on that, I turned my attention back to the skin, especially after last Wednesday, when one of the larger "pimples" weeped a clear fluid, like a blister.

Until I was able to talk to Dr. Kenyon, I did some searching on the internet about the skin changes. At one point, I thought that it might be "angiosarcoma". I don't want to go into details about it other than to say that the prognosis is poor and I continued to stay anxious and worried. When I finally talked to Dr. Kenyon, he decided he wanted to look at it, so he fit me into his schedule on Friday. I'm thankful he did because I really needed the peace of mind. The bottom line is that the skin changes - the peau d'orange, the pimples, the weeping area, are all symptoms of skin metastases, otherwise known as "skin mets".

The way Dr. Kenyon explained it, our outer layer of skin, the stuff we see, is what is not growing any longer and will die and slough off. Below that is the actively growing skin tissue, and below that are the lymph channels. What happens sometimes is that cancer cells in the lymph channels start growing up into the active, growing skin layer and they form small tumors, which grow and form bumps in the outer layer of skin. A website that discusses various aspects of metastatic breast cancer, which is called "Book of Knowledge", I think, discusses skin mets. The link is:
http://knowledge.bcmets.org/index.php/Skin_Mets . Symptoms include little nodules or pimples, areas that look like cauliflower, red patchy areas, skin thickening or hardening, weeping, etc.

There are apparently a variety of ways to treat them. You can treat them locally through radiation, topical chemo, surgery, or burning or freezing the lesions. Or, you can treat them systematically, via chemo and hormonal treatments. At the moment, my doctor wants to see how my skin mets respond to the Xeloda and Tykerb and I'm happy with that decison at the moment, because . . .

THE RED RASH IS FADING! It certainly isn't spreading and there are a few places where it's receding and there are places within the whole red area that are like normal skin. And, it seems that the hard little pimples are shrinking and disappearing. The two blistery areas - one that was weeping - are also shrinking. So . . .

YIPPEE!! That's why "seeing is believing" is in the title to this post today!

I was a bit down yesterday - I felt some queasiness and dizziness. So, I took it easy. I hate feeling that way, though, as my preference is to be productive. My partner, Scott, was here visiting me, and he was very supportive, but I felt bad that I wasn't better company.

But today, the skin stuff seemed improved over even yesterday! And, that put me in a better mood today.

As for puberty? Well, my face is breaking out - due to both the Zoladex and the Xeloda/Tykerb. Sigh! Add to that little nubbins of boobs, with tissue expanders only partially filled, and you get the picture. I really hated zits the first time around.

But, ultimately, the zits and the bit of nausea and dizziness are worth it because IT'S WORKING! I CAN VISUALLY SEE IMPROVEMENT! And, for that I am thankful.