Preliminary Lab Results

The surgeon on-call called me with the preliminary lab results. Dr. H said, "It's a staph bacteria". I replied, "Oh great" (sarcastically). He responded, "Oh, no. Not THAT kind of staph, but the ordinary staph that lives on everyone's skins. They don't know yet if there is an anaerobic bacteria, too, or if this is antibiotic resistant. We'll know that tomorrow."

IN the meantime, I still have a low-grade fever. Felt chilly into the early afternoon. Have had a little Tylenol this morning and some Ibuprofen a couple of hours ago and my temp is still about 99.6.

Biopsy Results

Dr. K. did a biopsy on Tuesday and his office  called with the results of it today.  The news?  The nodule he removed from under the lymph nodes was positive for cancer.

My interpretation is that the cancer is trying to run away from the t-cells in the lymph nodes.  So, it ran away to the skin.

This is what I wrote on Facebook earlier today:  "We, meaning my docs and I, knew that that cancer was in the lymph nodes. The cancer migrated (I.e., ran away from the t -cells in the nodes) to the skin area, so it wasn't much of a surprise. The UW doctor said that I may be eligible for another trial, which uses a topical treatment plus Abraxane. They are having "remarkable" results with that, apparently. I will find out later what they decide. I am just tired if this "third boob" under my armpit!"

So, now it needs to be treated. But Dr. K.  is going to talk to Dr. D. from UW about what the next step will be.  I will post when I know more!

A Glorious Day

We had a beautiful day here in the Willamette Valley. It was partly cloudy, but warm! I saw some crocuses blooming today on my way to the office. I'll try to remember to post the picture.



I had my echocardiogram today. The technician had trouble getting a decent angle to get good pictures of my heart. He finally got one, though, although it was a little "off-axis". I watched the monitor sometimes and could see my mitral valve moving as well as the color-enhanced picture that showed blood moving away and blood moving toward the transducer.

This afternoon, we had a meeting with some of the Ph.D. students on advanced anthro theory. I didn't read all the readings - but I did read a few more that were interesting. It was fun to discuss them. Well, not sure if "fun" is the right word, but it was intellectually stimulating.

I paid bills this afternoon and worked on my budget. My taxes were accepted by both the feds and the state. Between the items we've sold on Craigslist, a little more money I'm getting from taxes, more of a reimbursement from insurance for acupuncture, and the honorarium from Victoria, we are able to afford a little vacation getaway next week-end (after paying off a couple of things, of course). Eddie has a five-day week-end, so we're going to Brookings, Oregon, on the southern Oregon Coast. Plus, with mom and dad moving in, we all have a little extra.

Happy week-end!

CT scan today

I had a CT scan today - not sure when I'll get the results. If I don't hear from Dr. K by Friday, I'll give him a call. I see him July 10, though, so he may just wait until I see him.

Tomorrow is my zometa treatment day - will have blood drawn for tumor markers. I may get one of the results later on Thursday, but probably not until Friday.

As for Eddie's lice, there are less and less signs of the little buggers. I only found a handful of nits last night and this morning. I used this gel/shampoo treatment on him tonight and then I had to comb out the gel ... I think I combed out three lice - I think. It's hard to tell. They were little dark specks, anyway.

Scott's poison oak reaction was really bad the last day or two, so he finally went to the doctor today and got a prescription for prednisone. The rash was really weeping but today, they are finally drying up.

Not getting much writing done. Too much administration - reports, financial stuff, travel planning, meeting with students and others who are doing work for me so I need to keep up with what they've done and get them all started on something else. Phone calls to clarify a potential writing project. Gak!

What I need is about two full 8-hours of uninterrupted days to work. That's a luxury I haven't had in a long time. Whew.

Anyway, enjoy the nice summer weather we're having!

Takin' Care of Business

The past few days have been busy. I still haven't cleaned out my email inbox. But I guess I got a few other things done. I took Eddie to Portland on Friday - we went to Buffalo Wild Wings so we could play a trivia game against other customers. Borders had a trivia game, too, but Eddie only read two of about 20 of the series. He ended up in 2nd place.

Scott and I have been rearranging furniture in the house.

I've been cleaning house - and as I stated in my earlier post - I'm washing clothes and am on lice and poison-oak rash spotting duty.

Thank goodness I'm not teaching. I've got more time for this stuff.

I have a CT scan on Wednesday. My wheezing has decreased - it's almost gone, although it comes back if I have processed sugar. I *think* that enlarged lymph node in my left armpit is smaller. I had to search some to find it. I have been doing more qi gong and visualization and while I'm not taking the cordyceps alone, I am getting a slightly increased dose of it with my mushrooms - I increased that dose about a week ago. The feather mattress top is off the bed, too. Not sure if that helped or not. I think pollen is decreasing here in the Valley - although my mom's and my brother's allergies were still bad last week, when I felt my symptoms decrease.

In other words, takin' care of business.

Thinking Out Loud

As I talked to Scott last night about the CT scan results, I had the following thoughts that might help explain them.

I found out in February that I had both skin and bone mets. I started taking Xeloda and Tykerb in mid-February. We hoped that the drugs would take care of the skin problem.

Well, they didn't. So, I started daily radiation treatments at the beginning of June.

If you think about it, the skin mets were in the area of my right breast, the primary site of the cancer. I think of the primary site as a factory that continued to make cancer cells. The cancer was in the lymph channels, which then are connected to the lymph system throughout my body.

As long as I still had cancer in my skin, cancer cells were still growing and then circulating throughout my body. What the CT scan showed is that I had no NEW areas of growth. I take that to mean that the drugs Xeloda and Tykerb were indeed effective at stopping any further progression of the disease. As further evidence, the bone mets really didn't grow either.

But the meds were so busy keeping any new growth from occurring (and only so much of the medication is circulating in your body at any given time) that there was hardly anything left to tackle the little tumors in my bones - the meds kept them from growing, but there wasn't enough to make them disappear.

Now that the radiation has shut down the cancer cell factory in my skin, the meds may finally have the chance to tackle what's left in the bones. Zometa may help the meds get the upper hand there.

Whaddya think? Makes sense to me . . .

Good news, but not great news

My oncologist called me a bit ago and gave me the news.

The CT scan still shows multiple "abnormalities" in my bones, which are presumed to be little tumors. A couple may be a bit bigger, but he said that it could be part of the healing process as well.

The good news is that there was nothing going on in my lungs and liver. He said that things look "stable".

I do, however, have a couple of fractures in my right ribs. I asked if it was because the bones there were weakened from radiation. Dr. K said that it would probably be 6 months before my bones were stronger post-radiation. He then asked, "Did you fall?" I said, "Uh, no, but I did dive for the ball playing sand volleyball". I do sometimes feel a little bit of pain there and he asked me how bad it was. I said that it was minor and that it was hard for me to tell if the pain was from the ribs, from any swelling/lymphedema I have and/or was due to pressure because of the tissue expander.

I then asked if there was anything more that we can do for the bones and his reply was, "you're on Zometa, right?" I said, "No" and he asked "Why not?" I said that we talked about it once, but never followed up on it.

As I understand it, Zometa is given intravenously and is supposed to make the bones stronger and maybe more resistant to cancer, but i need to look it up on the computer.

So, like I said to Scott, "Stable is good. Nothing new is good. No new growth is good. I just wanted a 'we kicked its ass' report."

The fight continues. I'm doing okay. Disappointed, but it could be so much worse.

Waiting . . .

I had my CT scan yesterday and the radiology tech told me that the radiologist would probably read it later that day and that the transcribed report would be available to my oncologist today. I left a message for my doc to call me with the results when he got them . . . and I haven't heard from him yet. Trying to be patient . . .

In other news, my wound care nurse thought that the wound was healing. There was more pink tissue - yay! It's moving slowly, but surely, so that's good news!

I took my son and my folks and brother to the state fair yesterday. It was a fun time - I rode the Sea Dragon with Eddie twice. It's the one ride I can go on without getting motion sickness. It was nice to get out and about.

Other than that, just putzing around the house. I rearranged my living room about 11 days ago and now I'm thinking of moving another couple of pieces around.

As soon as I hear, I will let you all know!

Lab Results and Skin Issues

I saw Dr. Kenyon today and got the results of the blood lab results from last week. My CEA is 0.9, which is a good normal number. The normal range is 0-2.5 micrograms. So, it was in the normal range - a good sign! However, my CA 15-3 level was 36. Two months ago, it was 31. Three months before that, it was 23. Normal is less than 35.

So, should I be worried about this CA 15-3 result? Not really. While in the best of all possible worlds, we would have liked to see this number go down, it isn't cause for concern, because apparently, they are not quite sure what this test is measuring. Here is one critique of the test:

http://209.85.173.104/search?q=cache:a0xdCuoRq5gJ:grouppekurosawa.com/blog/2005_03_16_+CA15-3+blood+test&hl=en&ct=clnk&cd=4&gl=us&client=safari

According to what this person on the blog says (a Dr. Stephen Martin, who has a Ph.D. in immunology; he is promoting his therapy in the blog and seems to be defensive about what he does as it doesn't seem to be widely respected in the medical community; however, he quote legitimate research, although I cannot judge whether his interpretation of these studies is accurate), this tumor marker could also go up when the tumor is dying.

Dr. Kenyon also said that this test measures growing tissue, which could be an indication of another thing going on with my skin. In the area where there were skin mets (as opposed to just the rash) - that cauliflower area - I started to develop a hard thick scab. So, Dr. Kenyon advised me to soften it up a bit by putting aloe vera gel on it. The scab sloughed off last week, leaving an open wound that is about 3 inches long and half inch or so wide. A few small, pencil-eraser-width areas have bled a little and the whole thing weeps a yellowish clear fluid. Not a lot, but a little bit. So, I've been keeping it clean, patting it dry, and putting a non-stick dressing on it. I asked him if there was anything else I could do and his reply was to keep it clean and dry. It may take several months for this to heal! Bummer, but what can I do? At any rate, he said that the elevated CA 15-3 test may be an indicator of my body trying to regenerate the skin in this area.

In the meantime, no swimming pools for me! Double-bummer, because on Friday, my sister and her husband and two kids and Eddie and I are heading to a place called the Great Wolf Lodge, in Grand Mound, Washington, just south of Olympia. It apparently has one of the largest indoor water parks, including this funnel-like thing called the Hurlin' Tornado, that you go down in a four-person raft. Ah well. My sister said that they could take Eddie with them. That means that I'll get to go to the spa instead! And, get a manicure and a massage, too, I think! Yippee!

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.

Well, crap!

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.

Waiting again . . .

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!

Can one be woozy and still be on an even keel?

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?

Life (I refuse to write DEATH) and Taxes

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 . . .

Ahh, the waiting . . .

Hi everyone,
I thought that I would wait until I heard about the results of my PET scan and Her-2/neu analysis before creating a new post. I was told that Dr. Kenyon would probably get the results of my PET scan on Monday or by the latest on Tuesday, but I haven't heard yet. Then I figure that he's wanted to wait to get the Her-2 results before calling me. Anyway, waiting to hear about results does cause some anxiety, even though I try to be patient. This is probably one of the worst parts of living with cancer: the anxiety of not knowing and waiting to hear results. Today, I told my friend and colleague, Janet Lee, that NOT hearing the results yet might mean that it was good news - if it was bad (i.e., the PET scan showed something abnormal), Kenyon would've called me right away. That's what I hope, although I try not to make that assumption. If the Her-2/neu is positive (i.e., "overly expressed"), this might mean that I go on Herceptin for a year. I'll let you all know what happens . . .

I met with Dr. Faddis, the surgeon, yesterday, and with Dr. Havard, the plastic surgeon a few days ago. Their offices will coordinate to schedule the surgery, which I asked to be after November 9. At this point, it's a bilateral mastectomy with insertion of temporary implants, otherwise known as tissue expanders. After healing from the surgery, I will spend about two months getting "pumped up", that is, Havard will inject either 20 or 50 cc's of saline into the expanders in order to gradually stretch the chest wall muscles and the skin.

Dr. Havard and a couple of women that I talked to who went with reconstruction using implants used the term "pump it up". So, I decided to go into iTunes to find songs entitled "Pump it Up". There were almost 100 songs! There were several versions that were remakes by the same artists, which still makes a lot of songs with that title. Actually, though, the song I was thinking of is "Pump up the Jam" by Technotronic. If I can figure out a way to post that tune on this blog, I plan to do it, so that you all can think of me as I undergo "tissue expansion"!!! So, don't be surprised if you see me changing size over the holidays!