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 . . .

The things kids say . . .

As some of you may know, my son has Asperger's Syndrome, which is a form of high-functioning autism. One of the traits that he has is that he tends to "perseverate" (a fancy word for "obsess" or be really focused) on things that interest him.

For the past year, he has enjoyed going to the arcade, where he wins tickets for prizes. He ends up not caring much for the prizes, so I think it's the winning. He watches game shows, where people win prizes. He has several computer games (Wheel of Fortune, Price is Right, Deal or No Deal, etc.) that he likes to play where you can win money and prizes. And, he likes to scratch lottery tickets when we buy them. I tried to use the lottery tickets as a way to teach him about gambling - and the fact that you lose more than you win. If a lottery ticket was a winner, I would put half the winnings into savings, another way to teach him how to handle money better.

Well, this week, I informed him that I wasn't going to buy any more tickets for at least several months. After awhile, he informed me that his hand told him that it would stop working if it didn't get any "scratcherize".

I about burst out laughing! It was 1) just plain funny that he came up with this term that combined "exercise" and "scratch"; and 2) really impressive because it showed that he can be creative, which is sometimes difficult for a child with autism.

But I held firm - he didn't like the idea of not being able to scratch tickets for awhile, but he eventually accepted it.

Scratcherize! I'm still chuckling .. .

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!

I feel like something good's going to happen . . .

Do you ever have a feeling that something good and wonderful is going to happen? I have that feeling today.

Or, I might just feel that way because I had a great night's sleep, from 11 until 7:15pm. I woke up maybe twice and was able to get back to sleep.

Aahh, heaven.

And, it's sunny and probably won't be too hot.

I see my wound care nurse today, then my radiation oncologist, and then I am treating myself to a massage.

Even having THREE appointments today can't shake this mood.

I hope everyone has a wonderful happy day today. I think I will!

Celebrate good times, come 'on!

So, what does this title mean? Well, I don't have to wear that side-kick, Vac, anymore! When I saw the wound care nurse on Friday, she said that she felt that I didn't need the wound pump, so she called my doctor, told him that there was no cavity (i.e., there was no "undermine" in medicalese speak) and that she felt the wound could heal without the Vac. He agreed and I had a week-end of freedom! With no vacuum wound pump!

I was especially happy because I was going to a party with Scott in Astoria - old family friends of his - and I was dreading the questions that I might get, especially since I'd be around mostly strangers. So, I was pleasantly unburdened! And, I had fun at the party.

Yahoo! It's a celebration!

And, today, I had an appointment with my plastic surgeon. I requested that next time, he tell me what he's going to do and why before he does it. He apologized and then said that he would keep that in mind for the future. Then, we chatted some about reconstruction surgery.

I think, at this point, that we might wait until this wound heals. That may take a couple of months - no one really knows since this tissue has now been radiated twice. Then, we start "pumping" up the left (nonradiated) side in preparation for the implant. I have two options for the right side, both flap procedures. One is a TRAM flap, using my tummy fat and part of one of the abdominal muscles. This would weaken my abdominals somewhat. The other choice is a latisimus dorsi flap, using tissue on my back, near the shoulder blade. But there is probably not enough fat and tissue there, so I may also have to have a smaller implant there to even things out. That would require an additional surgery.

Choices, choices.

The good news is that I have several months before I need to make a decision, since I don't want to miss teaching any of my classes this fall. So, maybe in December sometime. On Wednesday, I have a CT scan and we'll see if there's any cancer lurking in my bones. I don't think so . . .

Let's all celebrate and have a good time! Celebration!!

A Day in Portland

Last week, a fellow "KI" (King Islander; "KI" used to be used by non-KIers as a kind of derogatory term, nowadays, KI's have appropriated it and state it kind of proudly), Joan Kane, emailed me to say that she, her mother, and her six-month-old baby boy were going to be in Portland. Joan (maybe in late 20s or early 30s) had to be in Portland for some training for her new job at the Denali Commission in Anchorage. She wondered if we'd be able to go up and visit them for awhile. I wasn't sure - depended on appointments and my energy level.

She called on Wednesday, when I felt really tired, so I tried to make sure that I got a good night's sleep on that night, because I wanted to bring my mom up to Portland. Joan's mom, Johanna, helped us with the King Island placenames project in 2005. We enjoyed getting to know her that summer. She played with my son, got my brother out of the cabin and helping out, and she and Mary Dillard found a bunch of white rocks and made a large flower made of these white rocks on the "patio" of Marie Saclamana's (Johanna's sister) cabin. When I called my folks on Thursday morning to tell them when I was bringing my son over, dad volunteered to help drive us to Portland and back. I felt okay, so we did.

We (mom, dad, Eddie, and I) left after lunch. That was before Joan was done with her training, so we took Eddie to Oaks Amusement Park in Portland and he was able to ride a few rides and play some games. Then, we went to the hotel, figured out where we wanted to eat, and then, because my car was too small for all passengers, shuttled people to the restaurant.

We also picked up Marie Tattayuna, who lives on the opposite end of downtown Portland from where Johanna and Joan were staying. Marie and my mom are first cousins, but they were raised as sisters. They only recently (in the past 18 months) were able to get back in touch with each other. (Too many moves on both of their parts.) The shuttling took a bit longer than expected as we had to go through downtown Portland in rush hour traffic! Sigh.

But it all worked out in the end. We got everyone to the restaurant. We all listened as Johanna, Mom, and Marie conversed in our King Island dialect. Johanna and Marie last saw each other over 40 years ago, I think at the boarding school they attended as teenagers. It was really nice and heartwarming to hear them converse and giggle at the dinner table. I got to know Joan more and I got to hold baby John (whose one Eskimo name keeps escaping me - until I see it written down, it just won't stick; his other one is Kukuluk, after Johanna's father, which makes baby John avasaq to my brother Scott - "avasat" (sp?) are people with the same Eskimo name and they share a special kind of relationship).

I found out that Johanna and Joan look through the photos from the King Island project at least weekly (see my post "King Island Photo Gallery"). That's gratifying to know that there are KI's who are using the information/photos we post on the web from the project. I thought that might be the case, but knowing the hard work my students (Cat, Kai, Emily, my brother Scott, and especially Alex last spring) have done to make at least some of the King Island placenames material accessible to the community is worth the effort. It redoubles my commitment to making more of it available by next summer, if not sooner.

This is when I love my work.

And, it was really really nice and wonderful to see some fellow KI's. Haven't been up to Alaska since last October, so it's been awhile. Even though I can't understand too much of the dialect, it is nice to hear it spoken.

I'm glad we went to Portland. We didn't get home until about 9:45/10pm, so we were all tired. But I wasn't fatigued. It was a good trip and worth the effort. Thanks, dad, for helping me drive! And, thanks to everyone for being there!