I think I may have mentioned that I get insomnia - have had it for years, ever since I started in a tenure-track job with the pressures associated with teaching, and the "publish or perish" attitude. Then, when my son was born in 2000, I just got used to operating on 6 or 7 hours of sleep and being tired all the time.
Then, in 2002, after undergoing chemo with AC, I developed hot flashes that would wake me up at night, too.
I continued to have insomnia, though, and I always attributed it to stress. My insomnia seems to be a little worse now under Xeloda and Tykerb, so I asked some other breast cancer folks what they use to get a good night's sleep. One person, Liz Kreger at www.lizkreger.com, mentioned that she uses melatonin.
I've been meaning to do some research related to melatonin and how that might help sleep. I just found one really interesting report on the web. The address is:
Basically, according to this study based in Boston, the researchers found that women who have low melatonin levels were 70% more likely to develop breast cancer!!!!! The theory is that your immune system works at night, when you're sleeping. If you can't sleep, your immune system isn't able to work as well as it should.
Low melatonin is associated with lack of sleep. The article also states that your body's melatonin decreases when there's a lot of light at night.
Since my son was a baby, I have used night lights - in my room or an adjacent one, in the bathroom, and in Eddie's room. I know it stems from an incident one night when Eddie was less than 12 months old: he was in our bed and I got up at night to use the restroom and as soon as I got up, he rolled off the bed onto the floor. It had been really dark in our room, so I didn't realize how close to the edge I was. I'm also blind as a bat - really really near-sighted - and I find I like the light so I can see better.
A lot of stuff about insomnia says to make sure your room is dark, but I kinda pooh-poohed that idea because I didn't understand the rationale. I'm also so used to the night light now, especially when I wake up and have to use the restroom. But, you know what? I'm gonna take the damn thing out - maybe that'll help me sleep. Then, after a few nights, if I don't sleep any better, I'm gonna try melatonin.
Friday, February 29, 2008
I think I may have mentioned that I get insomnia - have had it for years, ever since I started in a tenure-track job with the pressures associated with teaching, and the "publish or perish" attitude. Then, when my son was born in 2000, I just got used to operating on 6 or 7 hours of sleep and being tired all the time.
Thursday, February 28, 2008
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!
Monday, February 25, 2008
You know, I haven't really posted many entries about my son. Part of my reluctance is related to safety reasons, but tonight, partly at the urging of a friend, and partly because he was just so cute this evening, I decided to write something.
Jeanne at www.assertivepatient.com said that I should write a post about cutting Eddie's hair last night. Like Jeanne, I am the only person who has ever cut my son's hair. He's 7 1/2 years old but still doesn't want to go to a barber. I don't really know what I'm doing, but it looks okay, if sometimes uneven because he moves around while I trim. It also takes me longer than it might for a regular barber. But even so, I like to do this. Eddie still doesn't like it because I take too long and he wants to get up and move around, but when I suggest that he go to a barber instead, his reply is, "But, mama, you ALWAYS cut my hair!" So, I cut it because I like the idea that I'll always be around to do it.
Also, this morning, Eddie asked that we go to Borders Books after school so he can get the next books in the Magic Treehouse series. So, we bought three - #25, #26, and #27. Well, ever since we got them, he's been reading them. After dinner at my folks' house, Eddie went into the living room. Things were pretty quiet, so I went to check on him and there he was, sitting cross-legged on the floor, with his nose in a book. He read a book all the way home, too. He's already read the first two and is working on #3. So cute!
When I was pregnant, Eddie's dad, Tim, told our childbirthing class that he wished our son would like reading as much as I did. Well, it's true. I think he's hooked!
Last week, Eddie was the soldier in the play "Daniel and the Lions" that his class did for chapel. His teacher said she chose Eddie for this role because 1) it had the most lines and Eddie is one of the better readers in class; 2) he knows how to read with expression; and 3) his voice carries. He didn't need to use the microphone. He did very well and the other parents in the pews told me how cute he was! He even had to say "absurb" and they were surprised that he didn't trip over that word!
Am I a proud mama, or what? Of course I am!
Sunday, February 24, 2008
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.
Wednesday, February 20, 2008
A couple of weeks ago, I started outlining the red area on my skin around the right breast implant. I wanted to be able to state whether it continued to spread or not. My habit was to reoutline the area on Sunday, to monitor growth on a weekly basis. I outlined it again on Sunday - and using the Chinese herbs and mushrooms, the redness seemed to stopped spreading, except for one or two spots. I stopped those herbs when I started Xeloda and Tykerb on Sunday. Guess what? I swear the redness is already beginning to fade away. Cool, huh? I take this to mean that the meds are working! Yippee! Especially since I seem to be feeling little side effects.
I mean, other than sleeplessness. I could not get to sleep last night. I tossed and turned. I maybe got an hour or two, but not a deep sleep. I even had an anxiety dream from about 5:30-6:30am in which I did not get my act together because this household of people (mostly family members) kept messing with my stuff and then I couldn't find it. I was then late getting my son and bringing him to school this morning - and his class is running chapel today with a little play about Daniel and the Lions. The teacher gave Eddie the role of one of the soldiers because it has more speaking parts and he is the best reader in class. So, it was important to get him to school on time and I messed up. He missed his chapel. I'd been feeling these spasms or whatever in my chest yesterday, centered right around my breast bone. That made me anxious to think that maybe something was going on with my heart. Now, I think it was just anxiety . . .
Tuesday, February 19, 2008
Remember what happened to the Wicked Witch of the West? Yep, that's exactly what I'm imagining the cancer cells saying as the two new drugs hit them. Ha! Take that, cancer!
There's a witch theme going on today. Remember my earlier post "Time to Kick Ass"? I said then that I wanted to imagine the two drugs as mallets bludgeoning the cancer. I imagined myself swinging a mallet, but then I decided that there was only one of me and that I needed more. I remembered Mrs. Weasley in one of the Harry Potter books - I think it was the first time Harry Potter went to their house and he walked into the kitchen and just saw all this activity going on - a spoon was stirring a pot on the stove, maybe something else chopping up veggies, and then some knitting needles knitting something. All going on, all at once, with no human help. So, I started imagining lots of mallets going on, without me helping them except for waving my wand. I told that to my counselor today and she mentioned that maybe I should conjure up a Patronus while I'm at it! Sounds good to me!
I also bought the book "Wicked" the other day at Borders. I'm letting my dad read it, first. It came out a year or two ago and is a book about the Wizard of Oz from the Wicked Witch's point of view. Since I just bought the book, I figure that's when the "I'm melting, I'm melting . . ." comment came to mind.
Obviously, still doing okay on the drugs. Yay!
Oh, I forgot. I had a couple of spots on my cheek checked by a dermatologist today. Good news - nothing to worry about! They are called "seborrheic keratoses". Benign, pigment filled spots . . . whew! Saw Jeanne's post about melanoma a few weeks ago on The Assertive Cancer Patient blog and thought I should have it checked, just to be sure.
Monday, February 18, 2008
Let's face it . . . cancer is a terrible thing. It helps me, and others with cancer, to be able to blog about it and share our experiences. (P.S. Is "blog" a verb now? I heard "google" is now officially a verb, so I wondered if "blog" is, too?) But, sometimes, it's nice to report good news or to just be happy and positive and to report on that, too.
So, what am I happy for today? For one, it's beautiful and sunny in the Pacific Northwest. Second, while tired (still recovering from too little sleep), I'm doing okay on Xeloda and Tykerb. I have some periods of "urpiness" (is "urpy" a word?), but overall I'm tolerating them okay. I have great hope that I'll be like Liz Kreger and Jeanne Sather, who have little side effects on these drugs. Third, I had a good day . . . a computer guy at work found some old emails that I couldn't locate because my department upgraded my CPU a couple of years ago - luckily, someone copied them to my external drive beforehand! Fourth, we had a department meeting at noon . . . and they paid for lunch! Yummers. Fifth, I had Zoladex (my anti-ovary pellet) injected into my abdomen today . . . and while I will continue to have hot flashes and some insomnia, the nurse, Paula, who administers it was so sweet and nice and answered all my questions. Nancy, another nurse was there, too, and she was friendly and nice. Both know the drill when it comes to breast cancer, so it was nice not to have to go into great detail about stuff. Sixth, my folks are going to come over at 7pm so that I can go to the breast cancer support group tonight - the theme tonight is that we're learning "meditative calligraphy". I also hope to talk to the facilitator and the local breast cancer coordinator about bringing down Jeanne Sather to talk about blogging.
Yep, I'm in a good mood - I'm just so relieved that I'm doing okay on these meds. My prior experience with chemo was really unpleasant. Each time, my nausea was worse than the last time. I threw up, lost my appetite, and developed aversions to certain foods. I hate feeling nauseous, so I'm very thankful that I'm not nauseous at all. Yippee!!
How many silly or questionable words did I use in this post? Let's see: "blog" as a verb, "urpy", "yummers". What other words can I use?
Sunday, February 17, 2008
I know, I know. Inquiring minds want to know how I'm doing.
Well, I've made it through my first day on the two drugs Xeloda and Tykerb. For those of you reading my blog, you all know I was pretty nervous and anxious about taking those pills. And, while most people can tolerate them fairly well, some people can have some adverse reactions. With that in mind, I asked my folks to come over and hang out at my place this morning, after I took the first doses. I had my son this week-end and didn't want him to end up by himself in case I passed out or got very sick or whatever. They graciously came over and then I took them out to lunch. Then, it was off to my sister's to hang out so that Eddie could play with his cousins and my sister and I went shopping. I decided to hang out with Rena for the rest of the afternoon because she lives in Albany and some friends of mine who live there asked me out to dinner. Eddie's dad, Tim, lives about a block from Rena, so that made it easy for Tim to pick him up for the evening.
What am I feeling? Well, first of all, I'm pretty tired. I've had several nights of not-enough sleep, due partly to the cold, partly to the hot flashes/insomnia caused from the Zoladex (which is shutting down my ovary production), and partly due to anxiety over having to take these drugs. I also felt somewhat lightheaded and queasy today. I've been feeling generally light-headed, though, since Friday when I took Hwy. 34 back from the coast and got carsick. The queasiness may be due to the two drugs, but I seem to be successful so far in it not getting worse by making sure I always have food in my belly.
I'm not sure how long it might be for other symptoms to kick in. I guess I'll find out! I have been in touch with one woman, Liz Kreger (www.lizkreger.com), who has been great about sharing her experiences with me. She's been on Xeloda and Tykerb for about a year now, after having breast cancer metastasize to her bones and, at one point, to her lungs and even her liver. She started on this combination after the second time it ended up on her liver and she says that her latest scans show no trace of cancer anywhere and also her other numbers are low. Liz says that she has some fatigue and did have a bad case of hand and foot syndrome, but after decreasing her dose, it's manageable. Jeanne, at www.assertivepatient.com, said that Tykerb initially gave her diarrhea, but now her body seems used to it and her only symptom is fatigue and sometimes a tender heel.
Now, it's time for thank yous. First, to Liz, Jeanne, and Ellen (who wrote to me about her experiences with radiation and tissue expanders), for being willing to share their experiences so that I have some idea of what to expect. Also, I want to thank my folks and my sister and her family for hanging with me today and watching me to make sure I did okay. Thanks to Scott, too, for checking up on me throughout the day. And, finally, thanks to Heather and Kevin Kenagy, for inviting me out to dinner, and to Josh, Amy and Jackson Searles for joining us and for Josh and Heather to fight over who was paying my dinner! I think we'll all have to go out again so whoever lost can pay! hee hee. Bet you all didn't think I could figure out a way to get more dinners out of this thing! Ha!
Saturday, February 16, 2008
I mentioned that I had "several thousands" of dollars in meds on my doorstep. Wanna know the grand total for a month's worth of Tykerb and Xeloda? $5181.79.
Yup, over $5,000. $3104.50 for 150 pills of Tykerb and $2077.29 for 126 pills of Xeloda. (I take Xeloda for 2 weeks and then am off a week.)
I take 5 pills of Tykerb on an empty stomach or an hour after eating, then take 3 Xeloda, twice/day within an hour after eating. That's 11 pills a day, folks. On top of about 31 other pills each day (herbal supplements and Ibuprofen or Tylenol and calcium).
It's the cost, ultimately, that's scary. But chemo was about $2500 or more each time when I had it five years ago. Whew! Having cancer is not inexpensive. Boy, am I glad I have insurance.
Trying to enjoy another beautiful sunny day. Need to get my son out and about a bit. See ya all soon.
Actually, tomorrow is the day when I start kicking cancer's ass with the two drugs, Xeloda and Tykerb. They were delivered yesterday, in a cardboard box, hidden behind the bushes next to my front door. I wondered if they would try to hide it somehow because there are at least several thousand dollars worth of chemo drugs in that box! Scary to think about how expensive they are. Tykerb is about $23/pill, at five pills/day, x 30 days/month. I don't know how much Xeloda is, maybe not as much, but still there's over $3000 there. More than what's in my bank account, that's for sure!
I'm waiting until tomorrow to start the drugs because Xeloda is taken two weeks on and then a week off. It'll be easier to remember if I start on a Sunday - that's what I did with birth control pills for years, so it seems the logical day. I decided to say, "Time to Kick Ass!" for today's title, though, to help me adjust my own thinking about the drugs. While I want to start the damn meds so I can watch the cancer on my skin disappear, I have been anxious, too, because I fear the side effects. Two of the women I'm in touch with, Jeanne at www.assertivepatient.com, and Liz at www.lizkreger.com, are doing okay on the drugs. They are living more or less normal lives with some minimal side effects.
I just decided a few minutes ago, though, that it'll all go better for me if I take those pills as if I were swinging around a sword or bludgeoning the cancer with a huge mallet, instead of dreading putting them into my mouth. There is a purpose, after all, and it's to rid my body of this stubborn, goddamn shit that won't leave my body.
I'd been imagining my in-breath as a huge vacuum cleaner swallowing up the cancer on my skin and then breathing it out. While it seems to have worked some because the red rash hasn't spread, it's not going fast enough. Time to bludgeon it, right? Right!! So, it's attitude adjustment day!
Thursday, February 14, 2008
The pharmacy in Portland called me this afternoon and told me that insurance agreed to cover the drugs, Xeloda and Tykerb. The good news is that it's only going to be $15/month for each one. I read from Jeanne Sather's blog that Tykerb costs $23/pill; you take 5 pills per day, for a total of over $3,000/month. So, it's a bargain for me, comparatively speaking. Then, insurance called me to say that they needed prior authorization from me to talk to the pharmacy? Or something like that? Anyway, insurance said that the pharmacy agreed to reduce the cost of Tykerb. Forgive my cynicism, but when each of them are saying positive things about the other - the pharmacy agreeing to take a cut and then insurance only insisting on a $15/month fee? I'm suspicious, but in the meantime, I can enjoy a relatively inexpensive treatment.
But that does mean I'm starting to get anxious because I really don't know how my body's going to react to these drugs. Most women tolerate it and the side effects are relatively easy to live with. Each person reacts to the chemo differently. Another thing to consider is that, before, someone else administered the drugs via IV, I just had to show up. This time, I'm giving them to myself.
Another difference is that before, the cancer was hidden from my view; now I can see it on what's left of my right breast. I guess I'll be able to take pleasure in the fact that it disappears once I start taking the drugs.
I'm bushed. It's been an emotional couple of weeks and I'm feeling it in my shoulders, my neck, and my lower back. Where's a good masseuse when you need one? : )
Wednesday, February 13, 2008
So, a quick update:
I got the results of the bone and CT scan today. The bone scan wasn't too helpful, but the CT scan found calcium deposits scattered throughout my bones. They are the size of bb's. They're too small to biopsy so we don't know for sure that they are bone metastases (like Elizabeth Edwards). But the assumption is that they are because there isn't much else (I don't think) that would cause the calcium deposits. So, crap! It would really be nice to hear some good news!
Well, I guess the good news is that there wasn't any sign of cancer in my liver, my lungs, or my brain.
So, it's onward I go with the Xeloda and Tykerb. They should be in the mail in the next day or two. In the meantime, I've caught myself a little cold and it's mostly in my chest. I guess stress and an already weakened immune system are to blame there. Dr. Kenyon said wait and see whether or not this cold gets worse. If it doesn't, then I go ahead and start the two drugs.
I will get another CT scan in three months and hopefully by then these drugs will have caused the red area to disappear. It will probably be 6-12 months before we see those calcium deposits disappear, but the CT scan will hopefully show that there aren't any more of them nor are they getting bigger.
Please keep those positive vibes and prayers coming my way. And, keep toasting, "TO HELL WITH CANCER!"
I also need to post another joke, for all of our sakes! I'll try to get a good one out there tomorrow.
Tuesday, February 12, 2008
Dr. Kenyon called and left me a message tonight, while I was playing volleyball. The only thing he told me was that the drugs (Xeloda and Tykerb) have been approved by insurance and should be in the mail. No news yet on the bone or CT scan, although as some people told me today, if I haven't heard yet, that probably means that it's good news. If they found something, they would've called me sooner. Let's hope that's the case!
In the meantime, i wanted to thank Susanna Luck, Parcella Provance, and Paula Long for sending me books. They are much appreciated! I'm sorry I haven't taken the chance to thank you all in person yet.
And, thank you to my friends and colleagues for listening . .. and to Joan for inviting me over for dinner and for the wine tasting. That was interesting and the wines were very good! I think all of your good wishes and prayers are helping. I'm doing okay and feel that I'm able to live my life, regardless of the cancer. I'm still worried and a bit anxious and also tired (thanks for hot flashes and insomnia keeping me up at night), but overall, considering the latest news, I'm doing okay, moodwise. So, I appreciate it and I'm sure that it's because you're all there for me.
I have just decided that my toast is "To Hell With Cancer" for the rest of this month! It's not just for me, but for everyone who's been touched by this disease and are also currently dealing with it. Are you with me?!! Thanks!
Sunday, February 10, 2008
Having cancer means that there's a lot of medical appointments, with a lot of your time spent waiting to get in to see the doctor or to take the test, or it means waiting for the results of tests. I'm in waiting mode this week-end . . . so cancer patients need to have a lot of patience on top of everything else.
Take last Thursday, for instance. I dropped my son off at school at 7:50am and got to the hospital about 8:00 and to radiology at 8:05am. It took the receptionist a few minutes to figure out what was going on and after the paperwork was ready, I went down the hall to Nuclear Medicine. They brought me right back, but then we waited for the IV nurse, since the techs couldn't find a vein for the IV. In the meantime, they found that CT could fit me into their schedule, so after I got the injection for the bone scan, I went back out to the waiting room to wait to be called in for the CT. I was called in about 9am and finished at 9:30am. I had a snack in the cafeteria and then went to my cardiology appointment at a few minutes before 10am. The doctor had been called down for a catheter in surgery and he didn't come into the waiting room to chat with me until about 10:45am. He decided that I needed an EKG and I got that scheduled for Feb 25, in about two weeks (waiting again). This way, we figure out if my heart really is damaged (because of the MUGA scan three or so weeks ago) or if it was temporary because of the flu. Then, I went back to nuclear medicine for my bone scan; I only had to wait a few minutes and then they took two 20-minute pictures and I had to lie really still for both. Afterwards, around noon, I went back to the cafeteria to grab lunch.
This week-end, I've managed to stay fairly busy. Friday night, my cousin, Caroline Brown, and her husband and daughter drove down from Seattle (where they were visiting from Nome) to visit me and stay the night. They left Saturday afternoon. My boyfriend was also here; my folks came over for breakfast on Sat morning so mom could visit with Caroline, then we all went to my sister's house for my niece's birthday party. I got back home about 5pm and spent Saturday evening with Scott and most of the day today.
In the meantime, I'm waiting to hear about the results of my bone scan and CT scan - I hope to hear on Monday. Also, I never heard from Dr. Kenyon, my insurance, or this pharmacy in Portland that is going to send me the chemo drugs (Xeloda and Tykerb). I don't know if insurance is, in fact, going to pay for Tykerb, or whether or not Kenyon has had to talk to them and make a case that I should go on it. So . . . I'm waiting for test results and for drugs. I'll let you all know what happens when I know!
Thursday, February 7, 2008
That question seems oxymoronic, doesn't it? I mean, woozy implies that I'm dizzy, maybe unsteady, or swaying while being on an "even keel", means you're standing straight and tall. But maybe if I clarify - I'm physically woozy, but emotionally more on an even keel.
I'm physically woozy because I had both a bone scan and a CT scan today. When I went in today for my injection, the nuclear med folks called the CT folks and asked if they could fit me in and, lo and behold, they could. So, my morning went like this: I dropped my son off, then was about 5 min late for the injection, I got the injection, waited a bit, then went to get the CT scan, had about a half hour to grab my chai and a bagel, then saw the cardiologist, and then walked back down for the bone scan. So, I think both of the injections I received were radioactive - the bone scan definitely was, while the tech called the CT stuff "contrast". Everyone told me I should drinks lots of water (I have) and I haven't had any trouble with eating, but I am feeling slightly woozy.
But, as of yesterday, I'm feeling calmer, stronger, and in control again. On Tuesday, I cried a lot when I was at work - it was therapeutic to get it out and also to talk about what was going on with people. My colleagues are very supportive and their assurance and love and telling me they are there for me was just what the doctor ordered! Also, at the last minute, some representatives from Grand Ronde "smudged" me with sweetgrass and I think it was tobacco (I said it was sage at first, but it doesn't smell that way). They were at OSU picking up their materials from the Horner Collection - which was a very long process and it feels good that they got their artifacts back! The representatives are: Eirik Thorsgard (a former grad student), Bobby Mercier (who sang songs and gave a prayer in Chinook Wawa), and Travis. I have the leftover sweetgrass and tobacco they used and I must admit that just smelling them brings me some calm. So, I thank those three men for doing that for me and for my department for giving me such good support.
The cardiologist wants me to have an EKG, at which point, he will be able to tell me whether my heart damage is permanent or from the flu I had a few weeks ago and therefore temporary). The EKG is two weeks from Monday, on Feb 25.
Which brings me to this question: I want to reciprocate the efforts of Eirik, Bobby, and travis, but am not sure what it is I should do. Does anyone have any ideas?
Tuesday, February 5, 2008
Okay, okay, that was a bad replacement for "Planes, Trains, and Automobiles", but you've got to give me brownie points for trying!
The other day, I noticed that some friends of mine seemed to want to avoid talking to me about the news that the surgeons didn't get all the cancer. Of course, I can't read their minds, but I can only guess that they weren't sure what to say or what to do to help me and just maybe, maybe, they didn't want to see me burst into tears. I am still pretty emotional but as my boyfriend, my counselor, and several of my colleagues have reminded me: it's okay to cry and if you're uncomfortable with it, then that's your problem and not mine. It's better for me, healthwise, to let it all out. So, be warned . . . I am trying to gain my equilibrium and there are times when I don't cry. But I still do sometimes and it's okay. I'm really doing okay, the tears just need to come out sometime, okay?
I also want everyone to know that I want to talk about the whole thing - treatment options, how I'm feeling, etc. Please, please don't feel like you have to walk on eggshells around me. If I break into tears, it's only for a moment and then I'm able to talk about what's going on pretty calmly and logically. It takes more energy for me to introduce the topic, so I really really appreciate it if you ask me questions. I welcome them and I want to talk about it. So, in terms of what to say, ask me how I'm doing and what's going to happen next and also tell me a good joke! I do need to laugh. In terms of what to do: hugs are appreciated. I'm still able to function with all the daily mundane things to do (that is, except for cook my own dinner!); if and when I can't, I will ask you for help. Regarding dinner - at least two or three nights a week, my son is with his dad, so meeting somewhere for dinner is always a good something to do.
I mentioned Jeanne Sather's blog, entitled "The Assertive Cancer Patient". Again, the address is:
I bring up her blog because there have been several times that Jeanne has stated that she's learned to stay away from certain people for her own mental health. The two categories I remember that she mentions are: 1) those who are afraid she's going to die; and 2) those who are still dealing with their own fears of cancer. As you can imagine, those who fall into either of these categories have the net effect of 1) depressing the cancer patient, which then 2) takes away any positive energy that patient may have. I want to add a third category, 3) for those of us who are older siblings or are the take-charge type, people who bring to us their own fears of death and/or cancer make us want to take care of you rather than allow you to take care of us. We need you to take care of us. As my counselor mentioned earlier today, if you come to me in tears because of your own fears of death or cancer, take your tears to your own support system, and then approach me positively and with strength. I don't have energy for you otherwise and I might just learn to ask you to go somewhere else.
Okay, now on to the radiation. I just spoke with the radiation oncologist. The plan right now is to go on Xeloda and Tykerb (if insurance allows) and in about a month, we'll assess how effective they are. If they've proven to shrink the red "sheet" of cancer, then we start radiation. I'll have radiation for 6 1/2 weeks. In the meantime, I stop the tissue expansion as it's easier to radiate with less expansion. A month or so after radiation stops, then we can go back to expanding my tissue. That's about 3 to 3 1/2 months from now. I think I have at least two more expansions to get to a "B" cup. Then, it's a few weeks after that to get the permanent implants. So, I'm at least five months away from getting the permanent implants. When you see me during that time period, I will still be relatively small and lopsided! Just so you're warned . . .
Again, TO HELL WITH CANCER! And, thank you to all my colleagues who were gracious enough today to chat with me in the hall or in my office and ask me questions and give me hugs and allow me to cry in front of them. It's really wonderful to have such supportive colleagues! Love to you all.
Monday, February 4, 2008
So, I chatted with my doctor's office today. Tomorrow, after Dr. Kenyon signs the prescription form, his assistant Katie will FAX it to a pharmacy in Portland; this pharmacy stocks the chemo drugs Xeloda and Tykerb and they also know how to deal with insurance. They will notify me about the copay or whether or not insurance will cover them; if insurance doesn't cover them, then Dr. Kenyon will have a little chat. If insurance does cover them, they will send them to me within 24 hours, so odds are, I will be able to start the drugs by later this week.
In the meantime, I outlined the red area in marker yesterday and it seems like it has stayed the same. Also, I had another tissue expansion appointment today and I seem to have a bit more pain, like everything is much tighter than the past couple of times. So far, the doctor has expanded me about 350 cc's; to get to a "B" cup, I need 450 cc's. We'll see how much more I can tolerate because I think I read they want to expand you more than you need because things kinda settle in after awhile.
Katie also scheduled a bone scan and a CT scan for me. I get the injection for the bone scan at 8am on Thurs, then I see the cardiologist at 10am, and then the bone scan is at 11am. Then, the CT scan is at 9am on Friday. I have lunch with the chair of my department on Friday and the topic of the conversation is to plan my teaching and administrative responsibilities next fall around any future treatments I may have. So, hopefully, I will know whether or not the cancer has spread anywhere else by early next week, if not sooner. Thankfully, Kenyon usually tells me as soon as he knows the results of these tests.
And, for work, I need to finish a proposal for funding the last bit of my big King Island project; I need to fill out bureaucratic BS paperwork for one of the courses I teach; and I would really like to finish my taxes, that is, if I can even get them started. I downloaded the software today and then I tried to install it, but something didn't work; then I was on hold for 25 minutes waiting on customer support, a young guy finally answered and I started to tell him the issue, and then he promptly hung up on me. I guess I'll try again tomorrow . . .
Sunday, February 3, 2008
Dr. Kenyon is recommending that I go on Xeloda and Tykerb. Xeloda is a type of chemotherapy given in pill form. It causes diarrhea and sometimes redness and swelling and pain in the hands and feet. Tykerb is much like Herceptin, although it targets cancer inside the cell, not outside like Herceptin. Apparently, Tykerb doesn't affect the heart. Tykerb is also a little pill, that costs $23/pill and the usual dose appears to be 5/day, so it's expensive, about $3,000/month. See Jeanne Sather's blog, http://www.assertivepatient.com/, related to Tykerb and other treatments. Jeanne's blog has a wide readership and I find what she has to say very helpful. She's also gathered a lot of other cancer bloggers to her and gives their blog addresses. It's been good for me to read them all as it seems an effective way to communicate about side effects, treatments, how to cope, etc.
Dr. Kenyon said that, at this point in my treatment, he more or less wants to save the heavy arsenal for a later date (i.e., stronger chemo drugs) just in case we need them. So, he wants to go with drugs that are less strong, are usually effective, with less side effects, because now he's decided to treat me for the long term and not with the expectation that we can rid me of the cancer NOW. In other words, if I understand what he's saying (by reading between the lines), he is more or less expecting that cancer will be a chronic disease for me. In that case, give me the weaker drugs, allow me to keep me stronger and healthier since it seems that it's going to be a long-term kind of fight.
My parents, my sister, and my partner all went with me to see Dr. Kenyon. At one point, my sister, Rena, wanted to have Dr. Kenyon comment on my prognosis. His answer is that he doesn't want to say; he wants to wait about a year or so to see how I'm doing then before giving any estimate of prognosis. He wants to see if Xeloda and Tykerb are effective or whether or not we spend the next year or so putting out new fires as they arise. We are taking a "kitchen sink approach" - xeloda kills breast cancer systematically (throughout my body), Tykerb attacks cells that overexpress Her-2 (which my cancer does), and once we are certain that Zoladex has shut down my ovary production, I start taking aromatase inhibitors since my cancer is also estrogen-positive.
Hopefully, I start Xeloda and Tykerb this week so that we can begin stopping the spread of the cancer via the lymph channels in my skin. Later today, I plan to use a magic marker to outline the redness in my skin; this way, I hope to be able to monitor whether the drugs are doing what they should be doing to shrink the cancer in my skin. Hopefully, we will see it shrinking in the next month, and once we see that the redness is gone, then we go back to the rad onc and start radiation. I need to talk to the rad onc this week and see how she wants to time the radiation: before expansion, during expansion, or after expansion.
In the meantime, I started some visualization last night: my acupuncturist has me taking mushrooms via pill form, three of which have anticancer properties. She also started me on some other herbs that act to strengthen the heart, my blood, and my immune system and these also have anticancer properties. So, my visualization is this: the mushrooms are like archers, shooting at the cancer (especially that area where it's manifesting on the skin) and killing it; then since the herbs strengthen the blood, I'm imaging them as bulldozers that clean up the dead cancer and transport it to a place where they can be swept away as waste - sorta like a sewer system. Whisk that #*@* away!
Yesterday, I was relieved that I would take chemo as a pill and not intravenously. But I read about side effects and while they are less severe, I will still be uncomfortable. Also, last night, I had a bit of insomnia because the idea that I'm now a chronic cancer patient is still new - whereas before, I was operating on the assumption that I was rid of the stuff and now I was just doing things to make sure it didn't come back, now I may have to change my thinking to the fact that I have to live with it for the rest of my life and hopefully keep it from metastasizing. Well, I shouldn't be pessimistic, but taking a realistic view is good. So, hopefully these less invasive treatments work!
Saturday, February 2, 2008
but they don't fall down.
!@#%*#$#!!!!!! I mean, what else can I say except TO HELL WITH CANCER!!! I just found out yesterday that the surgeons did not get all the cancer when they did the mastectomy. F#@k! I mean that, too.
About 2 1/2 weeks ago (Jan 14), I noticed that there was a red splotchy area under the right implant. (In retrospect, there may have been a red splotchy area over the implant, too, but because of the incision and how it was healing, with some discoloration and extra pigmentation, it was hard to tell.) I mentioned it to my plastic surgeon when I saw him later that morning and he said that he wasn't sure what it was but perhaps it might be my skin reacting to the corticosteroid ointment that I'd just started using to try to minimize scarring. He said to stop using it and see how my skin responded. On Jan 16, I had my MUGA scan (see the post "I'm a Medical Puzzle") and when Dr. Kenyon called me the following day to tell me the results (my ejection fraction was 41 or below normal), I mentioned the red splotchy area. I asked him how long it might take the skin to clear up if it's had a reaction to the ointment and his reply was to wait about two weeks. So, on Jan 28, when I had another appointment with the plastic surgeon, I showed him and again, he said he wasn't sure what it was. But since I had a consult with the radiation oncologist the next day, he said that he'd call her to give her the heads up. It seemed to be spreading. I saw the radiation onc the next day and she wasn't sure what it was. She brought in my oncologist, Dr. Kenyon, who wasn't sure what it was either, but for peace of mind, he said we'd do a skin biopsy. His assistant took a sample of the skin and yesterday, we got the results. It was cancer!
My fear was that it was inflammatory breast cancer. But it apparently has the same pathology as the cancer from the mastectomy, so the explanation is that there were some cancer cells left in the tissue since they can never take all of it away with surgery. Now it's in the skin and spreading through the lymph channels in the skin as if it were inflammatory breast cancer. So, now I know that cancer is still there. Kenyon consulted with his colleague, Dr. Livingston in Tucson, and the recommended treatment is chemo, radiation, maybe consider Herceptin while watching my heart fairly closely, and possibly Tykerb. He said that they would use some milder chemo drugs. I don't know yet about the timing of radiation: do we do it now and stop the expansion? Do radiation while I'm expanding? Wait until expansion is completed and then do radiation? I don't know, but I will talk to Kenyon later today to figure it all out. My bet that radiation is the first course of treatment, since we know it's there and it's still local and not spread anywhere else in my body. Radiation kills it locally. Chemo would attack it if it were elsewhere. And, it is noticeably getting a bit bigger - not by much, but I notice it. I think I might opt for radiation sooner rather than later. CRAP!
I'd been looking forward to jumping into my research and perhaps beginning a couple of new things, but this has put a crimp in all those plans. It's time to pull in again and just finish the projects I already have and not start anything new. I already notified NSF, who had just asked me to serve on a panel to review some proposals, and said that I would probably have to decline the panel review. I have another commitment at NSF that was to start in March and extend through June, and I think I might have to decline that, too, as I will either still be in the middle of treatment or just finishing and maybe tired or my immune system might be compromised and I won't want to travel. I thought about taking on the responsibility of mentoring a Ph.D. student, but I have decided against that and will wait for the following year, after these treatments are behind me.
S*&T!!! Like I told Scott and my family and friends, or like they told me, now we know the cancer is still there. It's time to pull out the full arsenal. I didn't want to do the treatments (chemo and radiation) "just in case" because the risks of long-term side effects seemed greater than the benefits (why treatment something that is probably not there?). So, now I know and that means there is a fight in store for the next 6 or more months. Goddammit!
My belief is that it hasn't spread elsewhere, still, so that is why radiation seems the first course for me. I will do chemo, too, and one of my friends, Tammy, has offered to hold the puke bucket for me after chemo. She said she may end up puking with me, too, but hey, she said, maybe this means she'll lose some weight!
Like I said in the title to this post, "weebles wobble but they don't fall down". I'm wobbling, but damn if I'm going to let this thing put me down!! I'm going to get some tequila and later today, I plan to have a toast with Scott and my friends and the toast is, "TO HELL WITH CANCER"! If and when you read this, think about me, and if you are one to drink, please do the same toast. Maybe if we all shout together, we can scare it off or at least let it know that it's in for the fight of its life! Goddamn crap, anyway.