Tuesday, March 31, 2009

Visit with My Doc

I had a check-up with my oncologist today, Dr. K. It went pretty well. I told him about my trip last week to Norway. There's something I haven't shared with my readers yet because this opportunity that was discussed while in Norway is only an idea right now and may not go anywhere, but the fact that the idea was discussed is very exciting and I shared it with him. He could tell that I was pleased and his reply was something like, "it's heartwarming to hear something good after all the bad news that you get when you have cancer".

I asked him about whether or not it's unusual for someone to have low tumor markers like this for as many months as I have. The quick answer is that every case of cancer is different, so it's hard to make any generalizations. However, he did say that lobular cancers, which was what my first cancer was and it's assumed that my second bout was the same kind of cancer (although I'm not sure that was ever verified) tend to be more unpredictable. Lobular cancers also tend to be estrogen-positive and they also tend to metastasize to the skin and the bone. So, in that sense, my cancer is acting predictable. He feels, though, that since I'm doing well, I should just continue doing what I'm doing in terms of taking the Tykerb (err, um, sure) and getting the Zometa injections (they keep my bones strong).

I then asked him if there would ever be a day when I don't have to take any of these drugs and his reply was that I probably would have to continue taking drugs for the rest of my life. There are several new ones coming out, but since I'm doing well on Tykerb (ahem) at the moment, there's no need to switch up anything with my treatment.

I then told him about my theory about sleep. I said that Tykerb does interrupt my sleep - I don't fall into a deep sleep, which is needed for good immune system function. When I don't take Tykerb, I sleep much better (I still woke up a couple of times in the night while I was off the Tykerb). So, my immune system is not able to fight off cancer because I'm not sleeping well, which then creates the need for me to continue taking Tykerb. He seemed intrigued with that idea and said he'd file the information away for a few more months. I think we may reconsider things in August, when I've had a full year with the low tumor markers.

In the meantime, I will have a CT scan soon just to see how things are going and I will see him again in two months. I also have my next zometa treatment next week and will have my tumor markers measured again.

It's still my goal to be NED (no evidence of disease). And, then I plan not to ever deal with this disease in my body for the rest of my life. I'm making as many changes as I can to make sure of that!

Saturday, March 28, 2009

Home again

A huge thanks to Scott - who drove us all the way to my house from Seattle last night. This, after having been traveling from our hotel in Bergen for 20 hours. We left Bergen about 8am (midnight west coast time) and didn't really have many problems from there. However, we had a four hour scheduled layover in Copenhagen - but then our flight was delayed for another hour and a half. We finally got into Seattle about 7:25pm. Then we went through customs and all that. We probably got on the road about 8pm and got to my house about 12:30pm.

I'm tired. And, yes, I'm feeling jet-lagged. Scott drove the whole way. I told him I'd try, but I kept nodding off to sleep, so he pushed through all by himself. I would've stopped in a hotel, for sure.

But the trip was quite successful. I engaged in a lot of networking - talking to some of the movers and shakers in Artic science circles. I met a lot of new folks and there were a few other people that I had a chance to talk to again, including some folks at NSF and someone I met through NSF, and then one of my former professor's students was there - Beth and I coauthored a paper that will come out sometime in the next year - and we had a chance to visit and get caught up.

Scott and I loved Bergen. Granted it was expensive (salmon and boiled potatoes with 2 beers each was over $100), but the people were very very nice. The taxi driver from the airport to our hotel told us about the history and then waited in the parking lot to make sure we were at the right hotel. Then, the lady at the hotel gave us a "better" room that looked out over the harbor/wharf since we were going to be there for a few days. Generally, folks were friendly and helpful and most spoke English. I loved the city - it was very "human-sized" in that we could walk where we needed to in the City Centre. We would've loved to stay longer - hmm, an idea for my next sabbatical?

Well, it's time to see about doing something with my son ... I think we're going to see Monsters vs. Aliens today!

Monday, March 23, 2009

I'm in Bergen!

So, Scott and I arrived in Bergen yesterday afternoon. We were both really tired. We checked into our hotel, took a shower, found dinner, and then came back to the hotel and fell asleep by about 9:30pm. We slept in until 8:30am Bergen time, and then had breakfast and decided to wander around. We had a great day. It rained yesterday and through the night, but we ended up with mostly sun all day. It was chilly, though. We took the funicular (a kind of cable car) to the top of Mt. Floien today and wandered around the hilltop. Parts of it were still covered in snow. Things are just now blooming here - dwarf irises, some daffodils, and crocuses. It was a beautiful day. I think I got a bit of wind burn on my face. It feels okay now, but earlier today, it was red.

Tomorrow, the conference starts. I may be at the conference all day - maybe not so much on Wednesday. I hope to spend more time wandering around.

This evening, we went to a place called the "Harbour Cafe" and had dinner and a beer or two and found out that our wait staff were from Italy and Morocco, originally. The two guys from Italy were married to a Norwegian (who he met in Florida) and Kenya. They've both worked in the states, Dubai, and now Norway. Both of them say that they don't like Bergen so much - it's way too cold for them. They're both from Sicily. It was fun chatting with them.

Well, I need to get settled in ... gotta get up in about 8 hours! Yikes! I think my body is still on West Coast time!

Thursday, March 19, 2009

The Fever Strikes Again

Eddie walked in this morning with tears forming in his eyes. He said, "I'm really really cold". Poor guy. He was bundled up in a sweatshirt and a coat over that and his hood on. So, I cuddled up with him, tried to get him a bit warmer and then took his temperature. It was 101.2 with one thermometer and 101.8 with the other.

He doesn't have any other complaints - no headaches, no stomachache, no sore throat. My mom checked to see if he had a rash - nothing there. He finished his course of antibiotics a week ago. Not sure if we should take him in again to see if he needs more. Hard to tell with everything that's going around.

So, he's home with my folks and I'm at work. Gotta get a bunch of grading done. And, some other administrative stuff. Organizing a lecture series and a nomination for an incoming grad student. I'm getting there, though!

Two days and I start my trip to Norway - yay! I need the break!

Wednesday, March 18, 2009

Random Thoughts

I've haven't been blogging much lately - I was busy last week with guests and this week is Finals Week, so am busy with grading and a myriad other administrative tasks like recommendation letters, information requests from various committees, etc.

I won't be blogging much next week, either, because I will be in Bergen, Norway! I leave Sat evening and Scott is coming with me. We arrive Sunday afternoon and I presume we'll be wiped out by that time. Monday the 23rd is free, so we'll get a chance to wander around and then I'll have meetings from the 24th to the 26th. It'll be cool there, as they are at a little higher latitude than I am. I think temps should be in the mid-40s. But a change of pace will be really nice.

I'm feeling pretty well. My abdomen is still a bit tight, but other people aren't able to observe it as I stand fairly straight. If I twist, I can feel it. I'm still having to wear pants that are loose in the waist as my abdominal scar is still tender. Too many of my pants (which have been made to fit low in the waist) hit that scar, so I'm still debating how to handle it for Norway.

Two weeks post-surgery, I started taking Tykerb again and my face broke out - all over my chin and around my nose. Sigh. So, I went off it for a few days and then tried again and it broke out all over again. I went off it for a week and it cleared up. I also noticed that when I was off Tykerb I slept soo much better. I started it again on Sunday - my face is still clear, but my sleep has been disturbed and my hot flashes have been worse.

I'm debating about whether or not I should continue taking Tykerb. I know what my doc might say. My thinking is that I am doing pretty well at the moment, with low tumor markers and decent energy. Wouldn't it be better to go off it and if (and I think it's a big IF) I had a relapse, then I could go on it again and it would be more effective? When I mentioned this reasoning to my colleague, his reply was that while that might work for antiobiotics, Tykerb works differently. The belief is that Tykerb is keeping everything under control and that if I discontinue, the cancer will come back with a vengeance.

So, I started it again. I also painted my bedroom (pics will be posted sometime), and even one week later, I still got headaches. That reminded me of my carcinogenic mattress (I believe that that chemical pillowtop mattress caused my cancer to mutate and then spread to my bones and my skin), so I thought that it would be nice to have the extra insurance of the Tykerb.

But yesterday, after talking to my acupuncturist, I think that I may stay off Tykerb and not tell my oncologist and just see what happens. After all, I was off it for a month and my markers were fine. I just think that my body might be better able to fight any cancer better if I can get a good night's sleep. In other words, I think that Tykerb helps keep cancer in check, but at the cost of my sleep. Now that I'm getting stronger and rebuilding my immune system (from a Chinese medicine perspective), sleep might serve me better than Tykerb. In other words, maybe Tykerb is creating a vicious cycle in which it interrupts my sleep (waking every two hours and then having more hotflashes at night), so my body is not able to heal itself and fight off cancer, thus creating the need for more Tykerb.

I also figure that I've done or am doing lots of other things that help my body fight cancer. First, I had my ovaries removed and both of my breast cancers were estrogen positive. I also take a five-mushroom blend in pill form - three of them have been scientifically proven to be effective against cancer. I also take melatonin and as I mentioned in an earlier post, melatonin has been effective against tumor cells in mice. One of the student groups looked at light pollution and how there seems to be a correlation with cancer - they also mention that blind women have lower than average rates of breast cancer. These women don't perceive light and so their bodies are able to produce the melatonin they need for a good night's sleep. I also take turmeric which has been found to be antiinflammatory as well as effective against melanoma, a skin cancer. Turmeric helps with things like arthritis. I don't feel any ill effects from any of those herbs and I sleep better. And, I practice qi gong, still, which helps keep me centered and calm, not stressed out. That helps my immune system. As does coloring mandalas.

I've also been reading a book by Andrew Weil entitled "Spontaneous Healing". He states that by the time cancer has developed in a person's body, it means that that person's immune system has broken down. He's a proponent for doing things that build up the immune system again. Getting a good night's sleep is an important part of building one's immune system. Western medicine tends to clobber disease and illness over the head, but as it's doing that, it's clobbering the immune system as well. It's a fine balance.

So, I'm gonna experiment. It's my body, after all. I figure that I get monthly checks of my tumor markers and if they start creeping up, then it's back to Tykerb. I promise.

Monday, March 16, 2009


The past few days have been . . . challenging. I have had to deal with difficult people at work. I just got an email from someone that has me just wanting to cuss up a storm . . . but I can't. I have to be professional. I can't talk about it too openly. Part of it just has to do with the nature of my job. I'm trying to let go of it and take deep breaths and just realize that it goes with the territory. Because otherwise, all else is pretty good in my world. I just had to get it off my chest . . .

NOTE: I'm writing this two hours later and one of the situations that had me frustrated earlier has been resolved. I'm exhausted now, though. I will say that grading is one of the most unpleasant tasks that I do in my job. That and attend multiple meetings in which nothing ever seems to get done.

Pics from Clara's visit

Hello everyone! I've been busy these past few days and haven't had a chance to blog. As I mentioned in my last post, my cousin Clara and her family were here visiting. On Saturday night, I think, Clara took this picture of all of us Kingstons and Trumps. It was kinda fun!

Also, on Friday night, Clara took a picture of me cooking dinner!

Yes, don't fall over backward! I actually COOKED! And, it was tasty! (Granted, it was easy, too, just brown some hamburger and warm up chili for Kingston-style tostadas!)

It was a good visit! I've stayed with Clara quite a few times, so it was nice to be able to reciprocate!

Thursday, March 12, 2009

A Happy Surprise

One of my cousins, Clara, who I (and mom and Eddie) stay with when we go to Fairbanks, surprised me yesterday by saying that they were on their way down from Seattle, where they were visiting Clara's sister, Robbie. Mom and Eddie and I usually take over Darrell's room. Clara was with her husband, Ed, and their three sons, Louie (32 years old), Charles (26), and Darrell (22). Sometimes, Clara and Ed stay with my folks, but mom and dad got a little Chihuahua/Papillon mix that's really excitable. So, I offered to let them all stay with me, so they took me up on my offer!

It's kinda fun - my house usually only has me and Eddie and occasionally Scott and his daughter. Now, there are 6 or 7 of us under one roof! This is when I realize that I don't have enough seating or even table space . . . but luckily, they're really flexible, not picky, and are happy to just be able to park for awhile. They've been driving all over - Colorado (where Ed grew up), New Mexico, Arizona, Utah, Nevada.

A happy surprise . . . I'm just glad that I can finally return the favor!

Sunday, March 8, 2009

A New Style of Scarf

The secretary of my department, Loretta, forwarded this picture to me early last week:

The caption was: "Try the latest scarf fashion and you will be the center of attention!"

Isn't it great? I wish I could find out more about this - if anyone knows, please let me know!

I had a good week-end. I wasn't as productive as I would've wished, but I felt pretty tired all day yesterday, so I guess I did what I needed to do, which was rest.

Yesterday evening, though, I did go to my department's fundraiser called "Empty Bowls".
The fundraiser is put on by the Nutritional Anthropology class, taught by my colleague, Melissa Cheyney. The students are responsible for a service-learning project, which includes this event. Empty Bowls raises money for food insecurity programs - this year, it was World of Good (out of Junction City, OR) that raises funds for impoverished people in Ethiopia, and also the OSU Emergency Food Pantry. They served homemade soup, had several varieties of bread and desserts. They had a Silent Auction and I'm proud to say that I engaged in a bit of a bidding war in order to obtain the gift certificate for 12 entries for a personal chef! Regular readers of my blog know that I do not like to cook, so I really really appreciate home-cooked foods. I outbid others for the gift certificate - it was $75. That comes out to a little more than $6/entree and if I remember correctly, each entree may serve 2 people. So, I think I got a deal out of it! Scott attended with me.

Played cards with my card-playing buddies last night afterwards.

Friday night, I went to dinner with Allison, another of my colleagues on campus.

Today, my dad and brother painted my bedroom. Scott helped me pick out the paint color a few weeks ago - I decided to go with a Rose Wine. I was going for a maroon-kind-of-color, but it ends up having a bit of pinkish hue to it. I really like it. I may do some sponging over two of the walls, for variety and to lighten it up some, but generally, I think the room feels warmer. Anyway, I'm happy. I didn't realize how dingy white the walls were until we started cleaning and painting in there. Yikes!

Well, now I better get to grading some papers. Sigh!

Friday, March 6, 2009

Yay!! Tumor Marker Results are In!

Have you guessed that it's good news?

My CA15-3 is 17.8!

It's been below 20 since early August 2008. Going on 8 months of good numbers. Can't complain about that! No sirree!

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 (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 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
Mar 2 2009 - 17.8 U/mL

Here's hoping you all have a great Friday! I plan to!

Yeeeee Haaaaawww!

And . . . YAY!

Sorry couldn't resist another cheer! : )

Thursday, March 5, 2009

Eddie and I are both on the mend

Eddie went to school today. He's feeling much better and has an appetite again. Yay!

As for me, I'm doing well, too. My energy and stamina seem back to normal and my incisions are healing nicely. I can feel a little bit of tightness around the right breast area. But I can almost lift myself to sitting from laying down without using my arms and more of the stomach. I still have a bit of discomfort around the belt line when the waist of my pants hit it. I'm gradually trying to stretch the abdomen where they released the TRAM. I can pretty much stand up straight.

Work is busy. But pleasantly so.

I don't have any complaints.

I like saying that!

Tuesday, March 3, 2009

Eddie has strep

We took Eddie to the doctor yesterday and it turns out that he has strep. I guess with strep, you don't need to have a sore throat nor any throat involvement at all. Eddie's strep manifested as a fever and he had little red bumps on the chest and the back. He also had a lack of appetite.

So, with antibiotics, Eddie is on the mend and should be able to go back to school. I think he's ready . . . and I'm just happy to see him giggling and laughing again!

Monday, March 2, 2009

Eddie, the Poor Guy

Eddie is home sick again, today, with a fever that has been as high as 102.6. We leave in a few minutes to see one of the pediatricians at the clinic. Will see what they make of it.

For the most part, he hasn't had many symptoms, other than a fever and lack of appetite. Sometimes he's had a headache. For the past day or so, he has also had a stuffy nose. His eyes started to water today and one eye is puffy because he's rubbing it so much. I bet in his weakened state, he now has a sinus infection.

Poor guy. Because he couldn't breathe out of his nose last night, we both didn't sleep well.

In the meantime, today was Z-day, only now I just have to take Zometa. No more Zoladex for me, since my ovaries were removed! Yay!

Sunday, March 1, 2009


In the first two months of 2009, out of a total of 59 days, I had 16 medical appointments on 15 days. In other words, on 25.4% of the last 59 days, I had medical appointments. I did not count the 3+ days I was in the hospital for surgery.

Compare that to last year, when I had appointments on 125 out of 366 days (about 34.1%), and I'm doing much better! More of my time is spent in living my life and less to my health.

Now, I don't regret that time spent on my health. I think it was a good investment of my time as I seem to be doing really well. But it is nice to be thinking more about my son, my family, my work, and my friends than about my health. The change of pace is welcome!

It also doesn't mean that I'm ignoring my health. To the contrary, I will continue to practice qigong, see my acupuncturist, do my follow-up appointments, watch what I eat (could always do better), etc. But that becomes habit and doesn't take front stage anymore.

And, that's a good thing! Happy March 1st!