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 . . .
Friday, August 29, 2008
As I talked to Scott last night about the CT scan results, I had the following thoughts that might help explain them.
Thursday, August 28, 2008
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 .. .
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.
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!
Tuesday, August 26, 2008
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.
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!
Monday, August 25, 2008
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.
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!!
Friday, August 22, 2008
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!
Thursday, August 21, 2008
I still have to finish my Stray Cut Strut Mandala. I drew a draft of it and I know what I'm going to do, but the past few weeks, I've either been fighting a fever, recovering from the loss of the expander, and yesterday, dealing with fatigue.
I also wanted to post before and after photos of me with my new friend, the Vac. Before is the tubing before I put ribbons on it and after. But I haven't had a chance to take a picture with the ribbons on it yet. I will get to it soon.
I feel fortunate today - NO APPOINTMENTS! This is the first weekday in a long time that I didn't have to do something, it seems like. I also finished the review I needed to get done yesterday. Yay! I finished it before the fatigue hit, fortunately.
Not sure where the fatigue came from. I had maybe 5 or 6 hours sleep the night before (which isn't enough, I know, but I'm usually able to function and yesterday, all I could do was close my eyes and lay down on the couch. It could've been several factors - not getting lunch early enough, having pizza and beer the night before (dehydrated and maybe too much processed sugar in my system), taking my antibiotic late (7pm instead of 5pm), and using a new brand of melatonin (going to go back to my old brand yet again, even it means an extra trip). I'm still tired this morning; I think I may have got at least 7 hours last night, but I woke up several times (2am, 4am-4:30am; 5:45am, then 7am). I went to sleep about 11pm, but I think I woke up sometime between 11 and 2.
Tuesday, August 19, 2008
Yesterday, during my dressing change, my nurse told me that she is no longer able to get a thin Q-tip into what used to be a cavity last week. It was probably a combination of both a bit of roof collapse of the Bat Cave as well as some growth of the tissue underneath. Good news!
I asked her if this was unusual or expected and she said that she wasn't surprised that the cavity had closed up that quickly. But I still have a hole in my chest that's about an inch (2.5 to 3mm) all the way around and about 5mm deep. The "tissue" is NOT granulated (see http://en.wikipedia.org/wiki/Granulation_tissue), which is not a good thing but also not expected since that tissue has been hit with radiation twice. My tissue has some pinkish tint to it, but it's this more amorphous white/yellowish tissue. So, this time, she did not pack the wound with the white foam (which stays moist and is antimicrobial), but with the granulated gray foam that will encourage the creation of granulated tissue. So, it will still be awhile for this hole to heal.
But, it is healing and that's a good thing!
No other remarkable news, other than I don't have a fever, I slept about 7 1/2 to 8 hours last night, and I don't really have much of a cough anymore. It's all upward from here!
I even got about half a review of an article written today. It feels good to feel somewhat productive!
Monday, August 18, 2008
I am not getting as much sleep as I want! Don't get me wrong, I'm averaging about 6 hours a night, which is a vast improvement over a couple of weeks ago. And, I tend to sleep about 3 hours at a stretch, which is better than 1 1/2 to 2 hour stretches. I definitely sleeping deeper, which is a good thing.
But, those Olympics! I stayed up late last night watching the women's 100m spring final and the women's floor exercise final. I've generally been up until at least 11pm if not midnight this whole week because of the Olympics. I've always enjoyed the Summer Olympics, but haven't really watched them much the past two Olympics in 2000 and 2004. In 2000, my son was maybe a month old and had just gotten out of the NICU in Connecticut. In 2004 . . . well, that was a difficult summer personally. No need to go into details.
I've tuned in, though, this time around partly because I've needed to take it easy with the removal of the tissue expander and my fever. I've enjoyed them and really enjoyed the Opening Ceremony - it was a really amazing show the Chinese put together.
As for the thunder boomers, after several days of really hot (90+,with about 100 on Friday and Saturday) degree weather and running my AC all day, we had an amazing thunder and lightning show here in the mid-Willamette Valley. It started about midnight on Saturday night with flashes and long rolls of thunder. Just as I was getting to sleep, a huge CRACK reverberated through my house about 1:30am. Scared the beejeezus out of me. I immediately sat up, heart racing, and then went to my son's room (with enough presence of mind to pick up the wound pump) to make sure he was okay. I don't think it woke him up until the end. We then had some showers that night. It fortunately cooled things down.
Then, last night, about 10:30/11pm, we had another thunderstorm, although it didn't seem as strong or as long as the night before. My window was closed, though.
Thundershowers are rare in this area. I grew up in Central Oregon and I remember sitting on our porch, watching the lightning shows around us all the time. I think I could probably count the number of thunder showers I've seen in the valley on one hand.
Today, I go in for my first dressing change with the wound pump . . . will report on anything interesting at that time! Have a great day!
Friday, August 15, 2008
As soon as I find the cable that connects my camera to the computer, I will post some before and after pictures of
Me and My Vacuum
(thinking of Me and My Shadow song)
After my nurse, L., finished packing the wound and then attaching the "drape" (which I called a "lid" yesterday), I looked down and realized that there are several feet of tubing that goes from my body to the pump. Maybe as much as 8-10 feet. Talk about a tether!
It's a clear tubing and I thought I might just stuff it in my pocket, but there's no pocket that's big enough for all of that. So, whaddya do?
Why decorate it, of course! I thought I might decorate it with beads and wear the tubing as a necklace or a belt and I still have to play around to see if that works. But when I got home, I thought about that curling ribbon you put on gifts. Perfect!
So, I'm experimenting with it a bit and will probably change it periodically, but I like it. I figure, people are going to notice the damn thing anyway. Might as well have fun with it and if someone asks, I'll just tell them the truth.
You do lose some vanity and also some inhibitions when you have cancer. It's out of your hands, to a certain extent, so you might as well play and enjoy the experience!
Hope everyone has a great day! Sincerely, Seven
Thursday, August 14, 2008
. . . except that I don't near have the size of boobs that Jeri Ryan has in Star Trek Voyager. You'll understand the reference here in a minute.
My wound pump, the "Vac", was delivered to my house today. There is a little suitcase, and three boxes, about shoebox size. Holy cow! So, two of the boxes have different kinds of dressings and the other box has canisters. The suitcase has the actual pump and the tubing.
So, my nurse will pack my wound with a dressing, although I'm unclear if these are the ones in the boxes or she will use others. Then, the tubing will go in through the existing hole, which will be threaded to a type of lid that will cover the whole hole. The tubing will then be outside my body, under my shirt, and connected to the pump which I will wear as a fanny pack, day and night. Apparently, I can shower with this although I assume that there will be some way to cap off the tubing and take off the pump.
As I typed that, I realized that I will have a tube coming out of my body, much like one of the Borg on Star Trek Voyager.
I guess I won't be Seven of Nine because she no longer has any tubing.
Darnit. I liked that reference.
In other news, the nurse thought the wound was already healing. A raw spot she noted on Tuesday is no longer there. My plastic surgeon's office called and stated that there was nothing growing in the culture they took from the wound on Tuesday, so it doesn't appear to be infected.
I didn't take Tylenol all yesterday and did some running around because I felt okay. Then, late in the afternoon, my forehead felt hot. My temperature? 100.9.
Okay, okay, I'll keep taking the Tylenol. Something's going on. Interestingly, my cough and chest congestion are much better. Perhaps I had a low-lying lung infection?
Ah hell. It's my blog. Call me Seven of Nine anyway. I'll be the Seven of Nine before she was changed back to human by Voyager. : )
Wednesday, August 13, 2008
Today, as I thought about my visualization of healing this Bat Cave, I thought that I shouldn't just call on my spirit helper, but also on Batman. Then, when I thought about healing, I remembered Claire, the Cheerleader, on the TV shoe, Heroes.
Scott has been an avid watcher of this show since the beginning, but I didn't take the time to watch it also. By the time I would've started watching it, so much had happened that I wouldn't be able to follow along. I decided to finally watch it when I saw Season 1 come out on DVD, so I bought the 5-disc set (this was post-surgery) and proceeded to watch all the episodes. I'm hooked.
Unfortunately, I tuned in too late to catch any of the short-lived Season 2 (only 11 episodes because of the writers' strike last fall), but I hear tell that Season 2 comes on DVD in two days. Guess who will be buying a set? Yep, yours truly. I've seen some of the previews for the new season, so I absolutely need to get caught up beforehand. (One day, as we were standing in line to rent DVDs for Eddie, I saw a Heroes magazine. I bought it. Silly me. But it was interesting and fun to read. There was a quiz you could take to determine what Hero you were. Guess who I was? Mohinder Suresh, the professor without powers. I figured that was about right. Scott was Nikki. He wanted to be the guy who can fly - Nathan, but instead he was this two-personality Hero.)
Anyway, I thought of Claire the Cheerleader, so this morning, I invited her and Bat Man both to help in the healing effort. Bat Man creates cool, handy gadgets - a nice guy to put together the scaffolding - and Claire supplies the healing energy and my helper guy designs the whole thing. I play hostess and supply grunt work!
Carver commented to my earlier post today (To the Bat Cave) that she was going to beam flower faeries to help in the effort. She had this beautiful photo of a blue flower she posted at Carver Cards that had this wonderful white beam of light in the middle - I said something like it seemed like a place where one could beam to and she replied, "Beam Me Up, Scotty!", so that's where beaming the flower faeries come in.
I asked elves to help in my earlier post, but since I thought about Gene Wilder and the Chocolate Factory a couple of weeks ago, I decided to ask for some help from those industrious Oompa Loompas, too. Can't hurt, huh?
Thanks again, everyone!
Within about a week or so after my surgery, after I received the news that there were tendrils of cancer throughout the breast tissue and I was facing the possibility of chemo, radiation, etc., (and I didn't want to go that route unless I absolutely needed to), I was fairly depressed and I despaired of making a decision. That was in late November.
I went to sleep about 10pm one night, after talking to Scott. I fell right out. Then, I sensed something. I struggled to open my eyes, as they felt dried out from the contacts. When I finally could open them, there was a balding man in a robe standing to the right side of the bed. I looked at him. He looked at me with a gaze that was somber - not menacing or happy, but with a resolute look on his face. It scared the bejeezus out of me.
Then, I woke up for real. I opened my eyes and there was no one by the bed. I looked at my alarm clock - 10:40pm. I called Scott (he's a night owl) back right away as I was a bit freaked out.
His first question to me was: "Which side of the bed was he on?" I replied, the right side. Scott said, "that's good". I asked why and he said that if it had been on the left side, it would've been bad news, but the right side is good news. His interpretation was that this visitor (as I came to call him) was trying to tell me that it might be hard but that it would all work out at the end.
I'd just finished reading Bernie Segal's Love, Medicine, and Miracles", which is about a group of Exceptional Cancer Patients who, by virtue of positive thinking (and this is just a quick take on the book) and meditation and visualization, assist in their own cure from cancer.
I found it inspiring so my first thought was that this visitor was Bernie giving me a message. My mom asked if it could possibly be my paternal grandfather. Perhaps.
Then, in June, I read a book entitled "Many Lives, Many Masters" by Brian Weiss, which is about using hypnosis to learn about past-lives in order to cure people from fears, phobias, disease, etc. Individuals that called themselves "Masters" would occasionally talk to Brian through his patient and teach him things. One point he makes is that we are here on earth to learn certain lessons and I began thinking about what some of my own lessons might be. They included things like rewriting this idea in my head that I don't belong, learning to let go of anger, frustration, and resentment over other people's actions, learning not to try to control or manipulate other people, etc. I mentioned this to my acupuncturist on a Friday and then to Scott, who performed reiki on me on the next day, that my intention was to learn these lessons and let go of certain things. My acupuncturist treated me with the intention of balancing some of these ancestral issues.
And, because of those treatments, I think I have changed. Those issues were toxic to my relationship with Scott. He commented last week that he thinks there has been a big change. I feel it, too, because there have been several times when I could've gotten really angry and then manipulative or turned around a depression, or been resentful of something, but I haven't gone there. My reactions have changed and that's a good thing.
I've since begun thinking of my visitor as one of those Masters. It has been a difficult experience, especially these past six months when I learned I had metastases. But I feel so different inside that I think the CT scan results will come back clean.
Now, I just need to get through this Bat Cave experience. I know I can do it. I've encountered many obstacles in this experience and I made it through. It's interesting phenomenon for me to say this, but, I have faith. I called on this Master or spirit helper to help heal the radiation burn. I called on him to help me with the Stray Cat Strut. I called on him last night when I woke up to start healing this cavity.
And, I woke up in a good mood, thinking, "To the Bat Cave!" Thank you to everyone who help me on this journey by praying for me, sending me blessings and good thoughts and good energy. It has really really helped.
Sooo, is this a reference to the Dark Knight? Well, yes, sort of.
I woke up thinking of that phrase, "To the Bat Cave!" and it's because as I tried to explain what it is we're trying to heal to Scott, I said that I have this little cave under my right chest, where the tissue expander used to be.
I now have an open hole, about an inch in diameter, where the tissue expander poked through. This is the hole the plastic surgeon yanked the expander out of and is the "entrance" to the cave. Once you go through the hole, this cave is about 8mm high, about 6.5 cm long, and 3.5 cm wide, with this 2.5-3cm white entrance on the right end (which is my right). At the edges of the entrance hole, the tissue is about 1cm on the "top" side and about 2cm laterally.
As I understand it, what we want to encourage is that my body grow tissue from the rib-side of the hole up to the top of this cave. So, I have to grow tissue that's 8mm tall, 6.5cm long, and 3.5cm wide. It will probably take 2-3 months and I may have to wear the "Vac" - the vacuum wound pump for as long as 2 months, depending on how well I tolerate it. I will wear this pump as a fanny pack. It makes a small amount of noise. But, as I understand it, the pump whisks away any moisture, which might harbor microbes, and it will also encourage red blood cells and blood vessels to the area for healing and for building new tissue.
I need to try to eat more protein. I've been trying, but I guess I could try to eat like Michael Phelps, who reported a daily diet of 8-10,000 calories; the breakfast he eats is enough to feed my whole family!! Protein will help my anemia as well as help build new tissue.
I was feeling discouraged last night, both because of the news of the wound pump and the fact that I still had a temperature; when the Tylenol started wearing off, it was 100. Sigh.
Although I didn't get to sleep until 12:30am (watching the women's gymnastics event), I slept fairly well and I had a lot less discomfort than the night before. The wound care nurse didn't pack the cavity with as much gauze (she thought the plastic surgeon put a whole roll of gauze in there!), so I think that that decreased some of the pressure. I was even able to sleep on my right side, which I hadn't really been able to do for several days.
So, last night, I started some visualization about this wound. Sometime, I will post about this visitor I had post-surgery in November. Since June, I've thought of him as a spirit helper of sorts. Sometimes, when I do the stray cat strut visualization, he's helping me kick out the cancer cells. Last night, I visualized him and me looking around the Bat Cave, taking a tour of sorts. Then, I started to visualize the tissue on the bottom (i.e., nearest the ribs) healing, by imagining a small group of elves building new tissue using cells as building blocks. So, when you think of me, help imagine these little elves rebuilding the tissue underneath. I would appreciate it!
I woke up in a good mood, though! Something changed during the night. Not sure what yet, but I think I won't have the fever any longer. Time will tell! Have a good day everyone!
Tuesday, August 12, 2008
I'm doing better today. I see the wound care nurse in about half an hour to see about this vacuum wound pump.
My fever is more or less under control because I started taking a full dose of Tylenol every six hours. More because of the pain, but luckily it takes care of the fever, too. I couldn't get comfortable last night before bed. Both because of the fever and because I started feeling more uncomfortable with the yanking out of the tissue expander. I have decent range of motion, it's just when I try to lift myself up from a laying down position and/or I cough, then I'm uncomfortable.
I saw my counselor today and it helped me to process the events of yesterday. I came out of her office feeling like I let go of whatever grief over the sudden and unexpected loss of the tissue expander. I knew that it had to go, but I thought I had until at least September before that happened.
The Tylenol seems to be helping with the fever and the pain.
My oncologist felt that the wound looked fairly good, under the circumstances. He did not feel or see any cancer in the skin. My CEA was 1.1 (under 3.0 is normal) and the CA 15-3 was 18 (under 31 is normal). Overall, he is pleased with how treatment is going and seems fairly hopeful. He has ordered a CT scan, which will occur sometime in the next couple of weeks. Then we will see if there's any sign of cancer lurking anywhere else. He felt that it might be 3 months for the wound where the expander is to heal. He will talk to my plastic surgeon to ask how soon he thinks I might be able to have reconstruction surgery. Other than that, we stay the course. He did say that I should slow down - that I need to be saved from myself (by wanting to do too much). He gave me a little hug. I like a doctor who does not act all stiff and professional. He has compassion and I like that. My white and red blood cell counts are low, but he said that they were actually quite good for all the treatments I get. He also said that my fever could be due to my body trying to expel the tissue expander and that I might not necessarily have an infection, but taking an antibiotic is a good plan in any case.
I'm glad I feel better. That always helps my mood. So does a good report from my oncologist!
Monday, August 11, 2008
I saw my rad onc and my temp was 101, even though I'd taken 500mg of Tylenol about 3 hours before. Then, she looked at the wound and she said that there was some "gunk" in it and thought that I should ask the plastic surgeon for an antibiotic. So, I did and I just took it.
I cried while I was there, more from anxiety because I didn't know what to expect and my rad onc also said that it's probably due to the fact that I don't feel well with this fever - no energy, etc.
She also checked my tumor markers from the blood tests I took last week. And, the CA-15.3 was 18!! Down, even from June's count which was 23! Anything lower than 31 is normal. In March, it was high as 36. YIPPEE SKIPPY!
There's some uncertainty, now, because I don't know how long this open cavity (where the tissue expander was) will take to heal. Having a vacuum wound pump in there will be interesting. Don't know what to expect. I guess I'll have my answers tomorrow.
I think that's why I'm still weepy - too much uncertainty.
My rad onc did say that it will heal and that this is the worse that'll be. And, no more radiation! That's what I need to focus on. I just feel bad because I can't do too much and my son gets bored.
Okay. Focus on the positive. I guess it's time for a gratitude list.
I went to see the plastic surgeon and he took one look at that area and he said it was definitely the expander. So, he had me lay back and asked if I could feel anything (no, there's no sensation there, I replied) and then he asked his nurse for some supplies. He then proceeded to drain the tissue expander, but he didn't really tell me that was what he was doing until I asked and I knew he did because I felt this warm moisture running down my side. Then, he felt around a bit and I could feel the pressure, he applied more pressure, but still didn't say what he was doing. I cried a bit (mostly because I didn't know what to expect and what he planned to do) and he asked if he was hurting me and I just said that I could feel the pressure and it was uncomfortable, but it didn't hurt. (You know, it's the kind of pressure you feel in the dentist's office when they're doing a root canal and you KNOW you should feel something, but you don't. Just the pressure.) Then, he yanked out the tissue expander.
I asked, "Did you already take it out?" and he said that yes, he did. As long as I couldn't feel anything, he could take it out as an outpatient procedure and we "saved half a day of prep and surgery". He said once the tissue expander was exposed, he had to take it out or risk infection.
Zip, bam, boom. All done. In the matter of about 15 minutes.
I'm still digesting it the whole experience.
In the meantime, he packed that open cavity with gauze to whisk away any moisture so that things don't get infected. He wants me to go back to the wound care clinic and have them pack that area with a "vac", or a vacuum wound pump which will keep whisking the moisture away.
In the meantime, the hole that the tissue expander poked through is still there and he didn't make it much larger by taking out the expander. I will still be able to see the radiation oncologist this afternoon and then my oncologist tomorrow. The plastic surgeon will see me tomorrow afternoon to change out the gauze.
He said if I felt up to it, I could take out the old gauze myself. I said I didn't think I was ready for that. I need some time to adjust to the whole situation.
Whew. I think I'll watch a feel-good movie and maybe color a mandala and just chill. My sis said Eddie can stay there all day and play if I need it. I may take her up on it.
I finally got up the nerve last night to really feel those two areas - one that's more black and the other that's turned clear but sorta grayish in color. I didn't want to feel them if 1) it was healing tissue or 2) it was cancerous tissue. But the area grew a bit yesterday and exposed more of the surface - so I felt it and it feels like plastic.
I think radiation caused the tissue expander to rupture. My body's trying to get rid of this tissue expander and that's why I have a fever. When I changed my dressing today, the whole area was clear, with a grayish tint and it was poking out more. Sorta like those cones Madonna wore for a bra in one of those videos, but it was pointing about 45 degrees to the right instead of straight ahead.
That's what I think anyway. I find out for sure at 10:15am this morning, when I see my plastic surgeon. If I have a chance, I'll post a blog about what it is and what he plans to do. If not, I may be out of touch for a few days.
Sunday, August 10, 2008
So, I had a fever July 30-31, then again August 3-4, and then I came down with a fever again last night and still have it today. I get chills and achey leg muscles. Scott was accommodating and took care of me as much as possible (I still wanted to go out to eat). I was 101.6 yesterday evening. I just checked it a bit ago and it was 101.3.
Does it have something to do with the tissue expander (which I think has ruptured)? Does it just mean that my body's immune system is still weakened so the instant I feel good and try to do a little bit more, my body rebels? Is it because my body just can't regulate my temperature because it's busy trying to heal the radiated area? Inquiring minds want to know . .. but I have to be patient and see if I can see my doc tomorrow.
I'll let you know as soon as I know. In the meantime, I'm feeling pretty tired. I plan to get a good night's sleep.
Saturday, August 9, 2008
I was able to get another decent night's sleep. I still wake every couple of hours, but I was able to get back to sleep. I daresay I got about 7 hours last night. A good thing!
The rest of this post is not for the queasy, but in case it'll ever help someone else, I'm gonna go ahead and report it.
So, those two black spots? Well, on Wednesday evening, I noted that the Biafine lotion I use to heal the open skin wound was actually forming strands over them. (Not sure exactly how Biafine works - but based on this observation, I think the lotion creates a kind of gel-like scaffolding that the skin tissue can form on.) My thought was, "No, we don't want to keep that stuff buried in my skin if it's cancer. We want that crap out!" So, I stopped putting Biafine over those black areas.
On Thursday, it seemed like my body was starting to push those black areas out as more of them were exposed. Thursday night, the bottom black one seemed more charcoal-gray and somewhat clear.
On Friday, the two areas seemed to be bumped up again each other and the bottom one was more gray. Last night, the bottom one was CLEAR and it looked like a gel-like substance, maybe 1/4 inch thick, maybe about 1/2 wide. The black area on the top now looks like a black scab. To the right of the two areas, the tissue (which is white and red) looked like it was pulling away from them and perhaps even irritateed a bit. When I push on the black area or the red/white tissue to the right of it, a bit of clear fluid leaks from it.
What the f#@* is it? I meant to call my plastic surgeon yesterday and/or one of my oncologists. Hell if I know. My thought this morning is that the bottom clear one is part of the tissue expander and that somehow the tissue expander has ruptured there because the radiation made all that tissue tight. I have an appointment with my rad onc on Monday, but I'm also going to see if my plastic surgeon can fit me in as well. Then I have an appointment with my onc on Tuesday.
The good news is that I have absolutely no sensation in that area.
I am not sure how usual this is, but it's weird. I guess I continue to be a "puzzle". Good for the docs, I guess. Keeps them on their toes!
In a good mood otherwise. Not much to do about it now, so I'm gonna head to Portland and enjoy myself!
Friday, August 8, 2008
Finally! Last night I got between 7 1/2 to 8 hours sleep! The first time in several weeks at least that that has happened. Getting back to using my original melatonin brand really helped, I think. For those of you who can get good sleep on a regular basis, thank your lucky stars!
Thursday, August 7, 2008
I just got caught up on some of the other blogs I read . . . one of my role models, Liz Kreger, who has battled FIVE recurrences of breast cancer over the past 5 years (and her initial diagnosis was 7 years before that, so a 12 year survivor) and who was one of the people who contacted me about the side effects of Xeloda and Tykerb, has just informed people via her blog that there's a tumor in the base of her skull.
She is apparently going to have radiation. She's tough. I have no doubt she'll get through this. But everyone, please send some healing thoughts and energy her way, okay? Thank you.
In two weeks, I was supposed to be attending the International Arctic Social Science Associatioon conference in Nuuk, Greenland. But for two big reasons, I ended up canceling the trip on Monday. I woke up almost giddy on Tuesday morning, which told me that that was the right decision.
First, my travel agent has been trying to get our flights booked, but there were apparently no flights available from Reykjavik, Iceland to Nuuk. The conference website said to contact these two individuals in case there were travel difficulties, so she emailed them, but no response. I think she contacted the airlines, but no response. So, we were "waitlisted" for those flights but we were never able to get on them. I remember my undergrad student trying to figure out how to get there several months and at that point, she kept running into road blocks, too. I tried once or twice, but found it difficult - the websites for the airlines would freeze up. It just seemed too difficult and then my student attempted to then fly to Copenhagen, but those flights take her to two other towns (not Nuuk) and then she'd have to get to Nuuk on small planes, but those flights were booked.
Second, on Monday, I was still pretty fatigued and frustrated about the fatigue, fever, and the cough/chest congestion. It just didn't seem that I'd be ready to travel in two weeks. I've been feeling better (no fever at least, and better sleep), but there is still some fatigue, probably due to both post-radiation effects as well as not getting a full 7-8 hours sleep.
Anyway, I think part of my mood on Monday was realizing that, while I would really like to see Greenland someday, this year wasn't going to be the year to do that. It was tough to admit that my body is just not ready for such arduous travel. That's when I realized that I am a cancer patient at the moment and I just have to remember that I need to take care of that first and not try to do too much. It's disappointing because I don't want to be reminded that I need to keep paying attention to my health.
Most of the time, I don't think of myself as a cancer patient or a survivor or whatever. I'm just someone who also happens to have cancer. I'm just me. Cancer doesn't define me.
But someday, soon, I feel it in my bones (literally), I will be able to say that I am someone who USED to have cancer. Believe me, there's gonna be a big celebration when that happens!! And, you're all invited!
Wednesday, August 6, 2008
Monday afternoon, as I thought about my sleep issues, two things occurred to me:
1) I'd bought a different brand of melatonin. Everyone knows that each company prepares its herbal supplements and vitamins in different ways. So, I went and found the original brand I started using. When I picked up the bottle, there, up front and center, were the words, "timed release"! Ding ding ding ding ... lights went off . .. oh, yeah, that might make a difference!! My body probably metabolized the other brand fairly quickly and the amount of melatonin in my system probably disappeared after just a few hours and then I couldn't sleep. As the label says, "Time release melatonin is formulated to allow for a gradual release of the active ingredient during an approximate six hour period. This provides the body with a more even absorption of melatonin."
2) Several weeks ago, I switched to taking Tykerb after lunch instead of mid-morning. You need to take Tykerb an hour before eating and then you need to wait another hour to eat again. When I first started taking the meds, I'd have breakfast (with Xeloda) and then wait an hour and take the Tykerb, but sometimes because of meetings and appointments, it got to the point where I was taking it at about 11am instead of 10am and then having to wait until noon to eat lunch. Well, the joke in the department is that at 11:15am, I'm usually roaming the halls looking for someone to go to lunch with. My previous habit was to eat a couple of times in the morning (toast, then a mid-morning snack), but taking Tykerb and having to have a two-hour period where I didn't eat anything was getting really tough. So, then it occurred to me to wait to take Tykerb until after lunch because I am able to go several hours then without eating. But, one of the side effects of Tykerb is "trouble sleeping". Monday afternoon, I realized that I probably had a higher level of Tykerb in my system around 9-10pm then I did when I took Tykerb in the morning. So, yesterday, when I woke at 6am (which I usually do and then I doze until about 7am), I took Tykerb then. Worked out fine. No issues with the digestive system.
And, the end result? I slept better last night. Still not great, but better. I fell asleep by 11:30pm, woke up at 1:30am and then slept solidly until 4:45am and then until 6am. So, at least 6-6.5 hours of good sleep. Better than 3 or 4 that I'd been getting.
Whew! Man. It's always something! And, trying to figure out what things you need to tweak to in order to deal with side effects (low blood sugar from not eating versus not sleeping) ... hell, you need to be your own detective!
Tuesday, August 5, 2008
Several weeks ago, as I lay on the radiation table getting my radiation treatment, the radio station that was playing over the loudspeakers played the song "Stray Cat Strut". It was a song that just happened to fit my mood that day.
Every time I do radiation, I would visualize different ways that the cancer cells were dying and going away. Sometimes, I thought of it like a nuclear blast (sorta like that nightmare Sarah Connor had in those Terminator movies), knocking down the cancer cells in their path. Sometimes, the radiation was like a commando walking around corners and blasting each cell. Sometimes, it was a healing light, cleaning up the whole dang mess. Sometimes, with a slower song, I imagined sauntering along and sweeping away the cancer. (It's interesting, I think, that I used a war image at first . . . that mellowed as the treatments continued. Hmm, what does that say? I think perhaps that there were so many cells to be destroyed at first, and then it was finding and cleaning up the last stragglers, which required a subtler method.)
(Or maybe I'm just full of s#$t!)
But the day I heard Stray Cat Strut, I imagined myself dancing along, either doing a hip bump on each cancer cell and knocking it down and out of my system. Or, it was like Willie Wonka (Gene Wilder in the original) when they went into the Candy Room and he would do this skipping dance step and kick those large balloon candy-fruit things. I was kicking the cancer cells out of my way.
I've decided that I liked that image a lot and so when I remember and I'm laying in bed (trying to get back to sleep usually), I turn the song on in my head and imagine dancing through all the bones that had those bb-sized tumors and hip-bumping or skip-kicking them out of my system.
Now, I've decided that I'm going to design an abstract mandala and color it. It will be called The Stray Cat Strut. I will post a picture when I'm done!
Monday, August 4, 2008
Teri, the Cheeky Librarian, sent us a book that she somehow created entitled "Snapshots with Eddie", all about our time in Seattle! It was a really cool, thoughtful gift (for Eddie's birthday) and one that he giggled at as he read her captions and looked at the photos.
So, thank you so much, Teri! It was awesome!
Well, the party went off without a hitch with lots of help from my family, my ex, and one or two other moms. One mom told me, "You should get the "best mom of the year" for this party". A lot of parents said that it was a cool idea. I'm just glad I had the time off to do something like this. Having metastatic breast cancer means that you want to make good memories for your child.
My folks and my brother Scotty helped with the set-up - making sure we brought out enough tables for snacks and as many chairs as we could spare - and then we set up the games. My sis and her daughter and friend helped to set up games, too. With the last game and the cake/ice cream, I asked Tim (Eddie's dad) to take over as I was nearing the end of my rope and he was fine with that. My brother Scotty will make a little edited video for Eddie for his birthday.
My legs and lower back were achey and tight from standing so long. Mom took care of the food and kitchen clean-up. Another mom picked up garbage and then set aside all the supplies we'd brought out. Another mom helped bring in furniture afterwards. Dad and Scott brought most of the furniture in. My sister's daughter and her friend were "Bob Barker" and "Drew Carey" and ran the games for me.
I couldn't have done it without all of them. It was fun - Eddie has good memories, and my brother just completed a video of the whole event for Eddie.
So, a huge thanks to Henk (my brother-in-law), Brenda, and Scott for helping me with Plinko and the Big Wheel. Another humongus, gihugic thanks to my folks for helping me clean, and then my folks, Scotty, Rena, Kenna and Ashleigh (Kenna's friend) for helping me set up the games and the food. Thanks to Tim for getting the pizza and the ice cream and for taking over the Showcase Showdown and the cutting of the cake. Thanks to Kathy and Norma for helping me with clean-up. Another hugigic thanks to my folks, Scotty, Rena, and Kenna and Ashleigh for bringing in furniture and clean-up. And, thanks to all of Eddie's friends who made it to the party! He really enjoyed himself! I couldn't have pulled it off without all of their help.
I need a pick-me-up. I'm going to watch Dancing around the World again. Such a cool video!
While still in good spirits, I have briefly cried in frustration a few times the past couple of days. I can't seem to fall asleep before midnight and then my sleep is broken up. I have been fatigued off and on for the past couple of weeks and almost constantly for at least a week now. I had a fever last Wed and Thurs, seemed okay Fri and Sat, then last night, after softball, I got the chills and I checked my temperature - it was 100.9. I checked it an hour ago and it was 99.9. I felt well enough to be running some errands and to get some things done at work. I must've overdid it. My assignment tonight is to rest and watch movies and color mandalas.
I have had almost constant chest congestion and coughing since early June. It's gotten worse the past couple of weeks. I've had shortness of breath while running the bases and also walking up to the cancer center for awhile now, too.
It could be allergies (they say the peak of the allergy season here in the Willamette Valley was a week or so ago). But I've never really had allergies before, but perhaps because my immune system is compromised at the moment, allergies are affecting me more.
The fever, chills, and achey muscles are something that Eddie and I picked up last week - maybe even while we were in Seattle, at the Seattle Center around all those people.
But the cough and shortness of breath seem to date to my starting radiation. Here's the NIH website on Tykerb side effects:
(Thanks to the Cheeky Librarian for finding me this information!!) Note the comment that if you have coughing and/or shortness of breath, to call your doctor. I have a call in to him.
Another site I found this morning said that one side effect is "interstitial lung disease". (Scroll down past the charts, just below the "decreased left ventricular ejection fraction" paragraph.)
I looked that up on the internet and apparently, this means that the tissue surrounding the air sacs in your lungs become inflamed (and may cause scar tissue) which makes it hard for the air sacs to fill with oxygen. I looked up other causes of "interstitial lung disease" (see http://www.mayoclinic.com/health/interstitial-lung-disease/DS00592/DSECTION=causes and apparently, radiation to the chest and/or for breast cancer can also cause it.
Who knows? I hope it's not the interstitial lung disease. Let's hope it's just a temporary effect and will go away.
I just talked to my doctor's office. They want me to monitor the fever and if anything changes related to that, then to give them a call. They also suggested that I keep taking my chemo meds, but I'm going to write them off for today and maybe try to start them up again tomorrow.
In the meantime, wish me a good night's sleep, please!
Friday, August 1, 2008
Does anyone out there need some feel-good vibes? Check out this video, entitled "Dancing Around the World":
I found it to be very heart-warming. If just one person can get all those people dancing, can you imagine what would happen if we all did something like this? Very very cool.
I found it by reading Doug's Blog. Doug lost his wife, Jane, to metastatic colon cancer in June. I hope she rests in peace, wherever she is.
For some reason, watching it on Doug's Blog is better than the original site, at least on my computer.
As Eddie says, "I AM ALL DONE". With radiation, that is. Yippee Skippy! My skin is tender and sore again, but now I know that it will feel better in a few days by using the soaks and the silvadine ointment. I gave the techs a thank you mandala (and forgot to get a picture) and told them I hope I never have to set foot in that place ever again, no offense, of course.
In other news, Eddie is back up to snuff - with an appetite and no fever. I'm still feeling low on energy and I plan to rest as much as possible today. Dad and I finished painting the white wedges on the Big Wheel - pics will be posted later, after it dries.
Other than feeling low energy (with chest congestion), my mood is good.
I need to remember that radiation does bring with it some fatigue. After nearly two months of daily radiation treatments (with breaks here and there), I guess I have a right to be tired.
Have a great week-end everyone! Will post photos of Eddie's party next week!