I woke up this morning still feeling tired from yesterday. I also had four appointments: 10:00 to see my therapist, 11:15 to see my surgeon, 1:30 to see my oncologist's nurse practitioner, and 4:00 to see my wound care nurse.
I went to my office first, with the good intention of working on edits for the grant proposal, but I checked in with my office manager - had to talk about my graduate student workers and to thank her for attending the Launch Party yesterday. Then, I visited with my friend, B. Then, I wrote some emails and then it was off to my first appointment.
I realized I had forgotten dressings for my wound - so on my way to see the surgeon, I stopped at my house to pick them up. Luckily, my house was on the way.
I got to the hospital and parking was awful. I circled the lot for 15 minutes - I stopped for a few minutes because a truck owned by the Culver Glass Company had taken two spots. So, I wrote him a note, "Parking is limited. You selfishly took two spots." Then, because the company number was on the truck, I called and told them that one of their employees took two parking spots and that other people trying to find parking in a limited area was upset.
Finally saw the surgeon after I followed a man to his car so I could snag his spot. The surgeon's still impressed with how well the wound is healing - I showed him the few nodules that have cropped up behind the wound in the upper quadrant. But he felt I should continue with Abraxane since it seems to be working and the wound healing.
Then, because I had to get something I needed from my Humanities Center office, I stopped by downtown for lunch (salads from New Morning Bakery), picked up what I needed, then back to the hospital to see my oncology nurse practitioner. They were running late - I think I was there just over an hour - but it was a good visit. She hadn't seen the wound since late September/early October and was impressed with how well it has healed. She also thought I should stay on Abraxane for now. I have this theory that the new nodules have cropped up because Abraxane has caused my white blood cell count to go down - it was 8.0 (whatever the measure is) when I first started Abraxane. Last time it was measured (the week before Thanksgiving), it was 3.7. That means that there aren't as many Herminator-2 cells running around to kill the cancer. As H. said, no one really knows why the nodules have cropped up and whether or not it would be better to stay off Abraxane and let the t-cells regenerate. What they do know is that Abraxane is working, so for now, we stay the course. I'm fine with that. I can handle the side effects.
Then, it was time to pick up Eddie, but I stopped at home to get his after school snack. After picking up Eddie, we ran an errand and I had about 15-20 min at home before having to go back up to see the wound care nurse. She has seen improvement over a week ago. The cavity is now only 0.8 cm deep; last week, it was 1.5 cm deep. Part of the reason why it's improved so much is that the top flap has collapsed down a little bit. Last week, the big area was 5cm x 2.5 cm and now it's 4.0 x 2.5 cm. Even the smaller open area has decreased in size from 1cm x 1cm to 0.8cm x 0.5cm. So, everything looks better - it's the new nodules that have cropped up that is a bit worrisome.
By the time I got home, I was tired. So, I listened to my body (the subject of my discussion with my therapist today was about cultivating my yin energy, my rest) and didn't do anything but watch TV. I thought that I could work on the edits for the grant proposal . . . but I decided rest was more important.
Well, good night. I hope you all sleep well!
Tuesday, November 30, 2010
I woke up this morning still feeling tired from yesterday. I also had four appointments: 10:00 to see my therapist, 11:15 to see my surgeon, 1:30 to see my oncologist's nurse practitioner, and 4:00 to see my wound care nurse.
Monday, November 29, 2010
We had a launch party for the King Island Place Names Launch Party. It was late this afternoon. But before it happened, there were last minute details to attend to. I didn't have the brunt of the work, though. That was Alex and Rebecka.
The website is: http://www.kingislandplacename.com/.
In addition, I had to grade papers and prepare for class.
Then prepare a quick powerpoint for the launch party. Then, go to the room for the party. A few logistics details for my uncle and my son and my family. Then, I did my presentation.
Boy, it was a long day.
I have a lot of people to thank. But I'm too tired to list them here. Instead, check out the Contributors page from our photo gallery. The website address is:
I had an interesting observation about this project: it has been funded by the National Science Foundation and we first received that funding in 2003. It's been 7 years.
That's a long time in the world of scientific research. A long time to produce deliverables for a $600,000 project.
In the end, we have a great website that has the King Island placenames in our dialect of the language; we have uploaded 11,000 photographs that the community can use; and we have two plant and bird guides for the island. There is also a lot of audio and video that the community can access if they have a login ID. Plus, two articles that I've written as a result of the project.
I made an interesting observation: the project has been book-ended by my baldness due to cancer treatments. I am bald today. I was bald in February 2003 after chemotherapy treatments from my first diagnosis of breast cancer. That was when I submitted the grant proposal to NSF. The project has had about as many ups and downs as my cancer treatment has.
The project has been difficult for a lot of reasons including cross cultural differences, interdisciplinary differences, personality differences, and community politics.
But it has also been the second most rewarding thing I have done in my life - the first being the raising of my son. It was so thrilling to give King Islanders the chance to return to their homeland; many had not been there in 20, 30, or 40 years. I feel very privileged to have been part of this process.
So, in the end, as of today, both the project and my cancer end on a happy note: the deliverables are in a finished enough form to give to the community. And, the treatment is working - so good news on the cancer front. I'll find out later this week what my tumor markers are.
Again, thank you to everyone who was ever involved in the King Island place names project. It was worth the wait. It was worth all the work. I am so happy I was able to help.
So, the holiday weekend was quite productive. As I mentioned, I went shopping on Black Friday; I enjoyed spending time with a friend of mine, B., that day. That night, I went to the Holiday Parade downtown and I got to see my son in the Corvallis Trolley and another friend was driving one of the Pepsi floats.
On Saturday, I just putzed around the house. I ran errands with Eddie, then consulted on holiday decorations, decluttered Eddie's room, filed and shredded papers in my own room and did laundry. My niece and nephew came over for the day and were research subjects for Eddie's Science Fair project. It's called "Game On" and is basically an experiment to try to figure out what the best position a gamer needs to take to get the fastest times in Marion Kart Double Dash. He's comparing standing with sitting on a ball with sitting on a stool with laying down. I also helped my niece create her beaded necklace and started one of my own.
On Sunday, I ran errands with Eddie and then worked on the King Island Place Names website, then on this grant proposal. I spent most of the day at the kitchen table on the computer and writing.
So, all in all, a good weekend. Normal activities. Some house work, some work work, some fun.
Kinda nice to hear, isn't it? Not too shabby for a person with metastatic cancer! : ) I love my life!
Friday, November 26, 2010
Ever since I joined my friends for Black Friday, I must admit that I find it kinda fun. The last three years, I got up early, around 3 or 4am, and went to Albany to go to Doorbuster's Sales at Sears, Kohl's, Target, and Fred Meyer.
This year, several stores advertised pre-Black Friday sales, so I went to K-Mart in Corvallis yesterday (my mom works there) and I wanted to go to Kohl's (but they weren't open). I ended up doing a bit of shopping at Fred Meyers.
First, before I went to my sister's, I also got some groceries at Freddies for pre-Thanksgiving snacks. Then, I went back with my sister and niece and purchased a few presents, and then we hung out at my sister's. My sister and my dad cooked most of the meal. Then, we played Guesstures, which is an old game, like charades on speed. It was fun, especially watching Eddie and my niece and nephew act out clues. Eddie did quite well! All in all, yesterday was a good day.
This morning, I almost got up early to go to the sales. But I decided to sleep in until 6:30am. I just need to get dressed and then I'll go to a few stores in Albany. My friend is going to pick me up at 10am here in Corvallis and we'll go to a couple of places here.
My afternoon will be spent on the grant proposal. Then we'll go to the holiday parade in Corvallis - my son will be in the Trolley with his dad - and then I'll bring Eddie home.
So, holiday happenings. Good time with family. Are you braving the crowds for Black Friday?
Wednesday, November 24, 2010
Yesterday, we had a snow day in the Willamette Valley. We started with rain and then had snow on Monday evening and off and on all day on Tuesday. It had rained a lot on Monday, so the roads were wet and then when the cold Arctic air came south, the roads were icy on Tuesday. I was supposed to take him to Shriner's in Portland for an appointment yesterday, but I canceled the appointment due to the roads. And, then Eddie's school closed because of the roads. So, we both stayed home and hung out.
I worked on the grant proposal off and on all afternoon yesterday, in between watching news about the weather or talking to the family. Mostly, I needed to look up some info on the internet to fill in some details. I was happy to be able to hang out at home and not do too much. I was still dealing with some fatigue.
Today, though, I had four appointments and meetings. I saw the wound care nurse, met with my grad research assistant, with one of my graduate student advisees, and then an Advisory Board meeting at the Longhouse. The good news is that the wound seems to be healing. The nurse felt that the cavity wasn't as deep and also said that one open area was small - instead of 2.5 by 1.5cm, it was 1.5 by 1cm.
The meeting with the grad research assistant went well as did the meeting with the grad student. But interestingly enough, the university closed at noon today due to an electrical fire in the steam tunnels. It also destroyed some of the fiber optic system so our internet was down, as was Blackboard, and, apparently, a lot of our fire alarms. It was because of the latter that they closed the university down because of the safety issue. So the Longhouse meeting was canceled.
I stayed in my office, though, for a couple more hours and worked on the grant proposal. This time, I had to look up info in the books I have in my office and then I had to jot down details so that I could add them to our References Cited list.
I'm relaxing tonight. I got home about 2:30pm. Talked to Eddie about his day at school (half a day, my parents were hanging out with him for Grandparents Day), then checked my email (since internet was down at work), then ran a couple of errands with Eddie and by 4pm, I was pretty tired again.
So, I'm continuing to plug away on the grant. That feels good to be accomplishing what I need to on that proposal. I still need to write up about two pages worth of material and then make changes to the proposal. I'll try to write up the two pages tomorrow. On Friday, I'll do the tedious editing on the proposal and finalize the References Cited. If we're successful, it'll buy me out of one class a year for two years and give me some extra summer salary. Buying me out of one class a year (or even two) is important; between my many medical appointments and fatigue from treatment, I just can't imagine teaching more than one full-time class at a time.
Tomorrow, I might do a little bit of work in the am, but then maybe some early bird Black Thursday shopping, then dinner at my sister's house. It should be a good relaxing day! Happy Thanksgiving everyone!
Monday, November 22, 2010
Resting. I need to do more of it while I'm on Abraxane. I had a treatment on Friday, I rested that night, but couldn't get to sleep until about midnight. I slept until about 7:30am on Saturday and then participated in the Psycho-Emotional Repatterning workshop all day.
The workshop was really informative and I enjoyed meeting the other participants. I learned more about Chinese medicine and the philosophy behind it. It was also brought together a lot of things that I have been learning. So, it was cool.
I took it easy Saturday evening and night. Mom and dad rented a movie called "My Name is Khan", which was interesting because the main character had Asperger's Syndrome. It was also a movie about intolerance towards Muslims in post 9/11 America. I enjoyed it.
I slept in until about 8am on Sunday, then relaxed and worked on the grant proposal for awhile, then ran errands, picked up Eddie, found some material for a new jacket kuspuk for me, and had coffee with a friend. Then, after dinner, I had to work on the grant proposal. We already had an extension and it was due today. So, I was up until after 11pm. I didn't finish the grant proposal, so I decided to ask my program officer for yet another extension.
I had to get up about 6:30am. Went to work. Left a message for my program officer and emailed her. But in the meantime, I had so much to do - I needed to grade papers (put that off until later this week), I needed to upload grades into Blackboard, I need to do IRB paperwork, I needed to prepare for class, I got an email about having to make minor changes to a supplemental request, and then I agreed to be interviewed by a student via skype. I quickly became overwhelmed today.
I also felt really fatigued and it occurred to me sometime this morning that I was feeling so tired, not just because I was up late, because my fatigue was more than just not enough sleep. I'm feeling this fatigued because of the chemo. Abraxane causes anemia.
I finally managed to prioritize what I could get done this morning and I decided to ask a couple of people to help out on some of the tasks I needed to do. And, then, an angel in the form of my program officer emailed me and told me that we could have a little more time before I needed to submit the proposal.
A lot of weight lifted off my shoulders.
So, even though I feel fairly good under this chemotherapy regimen, I was reminded today that I do get fatigued.
I had been operating like the Abraxane was no big deal since my mood is good and I'm getting such good results.
But it does affect my blood counts. I need to remember that and to take time to rest.
Which is all to say that I am still not able to do as much as work as I might want to.
Rest. It does a body good.
Friday, November 19, 2010
I had an Abraxane treatment this morning and it went off without a hitch. I didn't get much work done, though. But that's okay. My blood counts were on the low end, but were high enough for treatment.
I then went to lunch with a friend - I had chicken noodle soup and because I had a cough (maybe from my bagel, which was plain white - I wanted multigrain as it's better for me), the soup was a great choice as it stopped my cough.
I just want to get over this cold.
I was supposed to make an appearance for dinner at the Longhouse this evening, but luckily, the guest (Tom Arviso, publisher of Navajo Times) had to cancel his trip, so now I get to stay home and rest. I feel guilty as I haven't been able to get to the Longhouse all term.
But then I remember that I've had at least 60 if not closer to 70 appointments since the term started in mid-September.
So, the rest of tonight, I'm resting.
Tomorrow, I am attending a workshop entitled "Psycho-Emotional Transformation" which will be taught by my acupuncturist. We'll be talking about Chinese medicine theory and will get some qigong moves and acupressure points to help patients unstick stagnant energy. I'm sure that I'll gain some energy from this session.
And, Sunday, more work on the grant proposal . . . it's due on Monday.
Thursday, November 18, 2010
I think that my class is going well. I introduced the students to a couple of new concepts like syncretism and folklore performance theory. For the latter, I was able to bring in both My Xeloda by Heather Kenagy and the Mammogram video that Heather did as "Lady Tata" as examples of what it takes to be a good performer. While neither had anything to do with circumpolar peoples and climate change, my students enjoyed it. I think they got the main point and I was able to bring it all back to the chapters they were supposed to read (but none of them did). Anyway, it was fun.
I also met yesterday with my grad student and I think we have some movement forward on what she will do for her master's research.
I also worked on a grant proposal, that I'm working on with my friend and colleague who lives in Bend. She's done a lot of fieldwork on the Seward Peninsula. I have a lot of work to do on it today, though. Lots of NSF/OSU paperwork.
I only have a lunch at the Center for the Humanities today - they do a couple of these each term and pay for a lunch for their current fellows. I can't wait to get down to my office there so I can focus on writing. It's been tough this term - too many appointments - but next term, life should settle down.
I had dinner last night at Big River Restaurant with some of the other models from Puttin' on the Pink. What a great bunch of ladies! We talked a lot about environmental pollutants that can lead to cancer and shared other resources.
In other words, I am, for the most part, getting back to normal. I'm still tired in the evenings. But it's nice to have life settling down.
Tuesday, November 16, 2010
I just totaled up the number of appointments I have had this year - and included the ones that are scheduled through the end of the month. I also included Eddie's appointments that he has had for one reason or another.
Drum roll please . . . .
Total appointments through Nov. 30 - 159!!
That's 159 total appointments out of 334 days. That's about one every two days.
Here's a breakdown for each month:
January - 9
February - 5
March - 11
April - 15
May - 12
June - 16
July - 14
August - 12
September - 23
October - 21
November - 21
You can see it peaked in September and that's when I ended up with a wound and then it got infected. Also, remember that 9 of those appointments were up in Seattle, so that meant at least a two day trip each time.
Incredible. Thank goodness I had enough sick leave hours! I don't know what I would've done otherwise.
I saw both the wound care nurse and the surgeon today and the consensus is that the armpit looks great and appears to be healing as the cancer is dying. So much so that the surgeon wants to wait and see what Dr. K (my oncologist) says when I see him in two weeks.
Last week, after my visit with the wound care nurse, I began to suspect that I might not need plastic surgery at all. I ended up going back to my blog to see what Dr. D from UW said. In my blog post (), she said that once the chemo has killed the cancer in the area, it would probably heal within about six weeks.
So, we're waiting to see what happens. Which means, for now, no surgery in December because if it were going to happen, we'd need to start planning it now rather than later. This delays surgery until after the New Year . . . and at this point, because I'm heading to Hawaii for a workshop for work in early February, I'd probably even wait until after that to do anything.
And, you know, that's fine with me. Because if I do have surgery again, I'd rather it be to fix my lopsidedness and to trim the "dog ears" at my waist. And, I'm happy to allow the t-cells (Herminator cells) and Abraxane to keep doing their thing. : )
Monday, November 15, 2010
I am not sure if I've mentioned it or not, but about a week and a half ago, I caught a cold. It's been mostly a head cold with a stuffy/runny nose and then, a post nasal drip cough. I thought that I would get over it in a week or so. I didn't necessarily rest more, but kept doing my normal activities.
I had the second infusion of Abraxane for this cycle on Thursday. The steroids kept me awake until about midnight and I decided not to fight the sleeplessness. That night I only got about 6+ hours of sleep. On Friday, I stayed up until about 11 or midnight and woke up about 7:30 but didn't get up until 8. I putzed around, but then my folks and I spent the afternoon shopping in Albany and again stayed up until about 11 or midnight. On Sunday, I couldn't sleep in past 6:45 or so . . . then I was up late working on a proposal on Sunday and again, only got about 6 hours of sleep last night.
So, three out of the last four nights, I was only able to sleep about 6 hours. So, I'm worn out and that isn't a good situation to get over a cold. It was worse today - I had a headache and sore throat all day, in addition to the stuffy/runny nose and cough.
Silly me. I overdid it. I think I'm so happy that my tumors are shrinking and the treatment is working that I am beginning to operate "normally", i.e., that is staying busy, getting out of the house, doing work at all hours, running around, etc. Time to slow down again . . . so this week, that's my plan. To take it easy in the evenings. I have a social event Wednesday evening and on Friday, but the other evenings, I'm just gonna rest in my room . . .
Um, yeah, right. I'll let you know if I have been successful!
Sunday, November 14, 2010
My son, Eddie, has Marfan's Syndrome, which is a genetic mutation that causes the connective tissues to stretch. This includes the bones and muscles. So, he ends up being very tall and thin for his age.
In practical terms, it means that when I buy him pants, if they are long enough, they are too big at the waist. If I buy to fit the waist, he has high waters. So, whenever I go to a department store, or even places like K-Mart or Target, I search for pants that could fit him.
He also doesn't seem to like jeans. I am not sure yet, but I suspect it's because the texture is too rough. When he was a baby and toddler, with regard to his Asperger's Syndrome, he didn't like me to wash his feet with a washcloth or his body and hates cleaning his ears with Q-tips and trimming his finger and toe nails. So, he has a mild touch sensitivity. This means that now he only likes to wear athletic-type sweat pants. I've tried the twill cotton pants, but they are too "fancy" for him. I have even recently resorted to going to the men's section and getting XS or S track pants, but they are still big at the waist, so I finally attempted to use my little sewing machine (bought new two years ago, but finally took it out of the box). I tried to tighten up the waist on one pair of pants; I got it done, but it's not pretty!
So, yesterday, instead of working in my office (a madhouse on campus - it was Dad's weekend and a home football game), my folks and I ran over to Albany to go to a holiday craft bazaar. Then, we went to the mall and looked around at Old Navy and Target as he needed some brown pants and a green shirt for his Christmas program at school. Then, we went to Kohl's.
I found a forest green shirt for him at Old Navy and then, as luck would have it, saw that Kohl's was carrying skinny Levi's 511's. Hardly anyone sells skinny pants for boys anymore - hmm, wondering if that's a result of the "obesity epidemic" in our country - so I was excited. And, then, as luck would have it, they had the skinny jeans in a chestnut brown color! Yay!
The big test will be later, when I ask Eddie to try his new pants on. If he likes them, I will probably get at least another pair. But they were expensive (at least compared to what I usually spend).
If not . . . the search continues . . .
Friday, November 12, 2010
I am not sure if I've mentioned this or not, but my scalp decided that it needed to go through puberty. In the last week, it really started to break out. So, I asked the nurses about it and it turns out that this is a common side effect from Abraxane treatments. The nurses and some websites I found stated to just clean and moisturize your scalp the same way you clean and moisturize your face. My current facial regimen is to wash it twice daily with a facial cleanser made of tea tree oil and awapuhi. I then use Aloe Vera gel, since it has antibacterial properties. Two days ago, I started washing my scalp, back to my neck, using the same regimen and this morning, I noted some improvement in the break outs. I also try hard not to touch my scalp very much - just like they say not to touch your face to help prevent break-outs.
I know that I mentioned the weird cramping that I have been getting in my stomach and I think I mentioned that my colleague said that Abraxane can destroy the inner lining of your stomach. The cramping started on Sunday evening and it was pretty constant through yesterday, starting after I ate anything. (Luckily, it hasn't affected my appetite.) Yesterday, when I needed to get some info from my acupuncturist, I asked her if there was some herb that I could take, so based upon my symptoms (including my head cold), she mixed some powdered herbs together. Yesterday, I put the herbs into veggie capsules and started taking it last night with dinner. I've only felt the cramping once today - otherwise, I've been taking the herbs whenever I do have a meal and it seems to be working! Yay! I could tell, but I won't be explicit, that not all my food was being digested. And, that means that I'm not getting all the nutrients I need to help my body keep up the production of red and white blood cells. In the end, the herbs she gave me seem to be helping so far.
I'm pleased. It's nice to minimize side effects of treatment!
Thursday, November 11, 2010
Today, as I received my Abraxane infusion, the nurse and I chatted about my low CEA numbers. It eventually came out that they usually do not see (or maybe have never seen) anyone respond as well to the Abraxane treatment as I have. They haven't seen the CEA drop so quickly in just one month. We talked about how my incredible response is more than likely related to the UW immunotherapy and that the two therapies are working really well together.
Shall I saw it is unprecedented? Maybe not. Maybe in the context of my town, but the UW doctors did say that patients in the same trial as me tended to have results like mine - that after immunotherapy, the standard treatments all of a sudden start working really really well.
And, then again, maybe not. A good friend of mine told me today that he put my name into a reiki prayer pool this past month. I know a lot of people in my community and all over Alaska are praying for me. Other people are sending me prayers, blessings, good energy. My family takes care of the housework so that I have more energy to devote to healing or resting. My medical care team, including my acupuncturist and my therapist and the wound nurse and the infusion nurses, give me great care. My colleagues at work support me. My friends give me good advice. Other cancer bloggers are great role models for how to live life and how to handle side effects and also for their sheer perseverance to live.
I have also made changes. I have limited if not almost completely eliminated dairy and white flour from my diet. I am still trying to eliminate sugar. I don't drink alcohol as often. I try to practice qigong. I wake up each morning and try to decide that it will be a good day, even if that's not how I'm feeling, but by reminding myself of what I am grateful for, it gets easier to make that choice. I try ask myself every morning, "Would I rather spend my day pissy? Or sad? Or silly and happy?" I have repriortized work duties and how I choose to spend my time. I endeavor to be as stress-free as possible and part of that means not taking things personally or acting defensively with difficult people and reacting in a more mature, calm, deliberate way, rather than reacting rashly. I accept help when it's offered and then I try to "pay it forward".
I think that all of these things have culminated in my current, happy state of affairs: dropping tumor markers, shrinking and disappearing tumors. And, the realization that I have a wonderful, beautiful support system. There have been reports by other doctors and practitioners of Chinese medicine of people who were able to turn their cancer prognoses around. There are reports of cancer spontaneously disappearing. I have tried to learn as much about what these patients do and what kind of medical care they seek because the people who came before me have set these precedents. So, no, it's not unprecedented. I have role models to follow. I have great friends who give great advice. But even if it isn't unprecedented, it's still great news!
Thank you everyone! Every little bit helps!
Wednesday, November 10, 2010
I think I mentioned in a blog post a couple of days ago that one of the side effects I am experiencing is stomach cramping. When you read the list of potential side effects, they say "stomach upset" or "stomach pain", but in truth, it isn't painful. It just feels like a tightening or spasming of the tummy muscles. It's not even uncomfortable. Just weird. [WARNING: don't read the next sentence if you're squeamish.] And, I have some diarrhea and/or soft stools.
I should also say that I think I've lost a few pounds since starting Abraxane - maybe 4-6 pounds or so. My appetite is about the same, so either my body is using a lot more energy to whisk away the dead cancer cells or my body isn't absorbing the food I eat as well as it should. It's the latter, probably. I haven't minded the weight loss because I felt at least 15 pounds or more over my ideal weight. I'm about 11 or 12 pounds less than I was in June. Partly because of the recent weight loss due to Abraxane, but also because I think I've lost some fluids from the skin wound - I have less lymphedema than I did in the summer. Dietary changes have also contributed, like cutting out white flour recently and dairy products and I'm really trying to decrease my sugar input. I also haven't been drinking as much beer since summer. If I lose more than 5 pounds, I'll get worried. But losing another 5 puts me at the ideal weight for my height and bone frame.
So, I told my colleague, S., about my stomach cramping symptoms and wondered why. S. knows how to get into the medical literature that reports actual studies.
He told me this morning that it turns out that Abraxane can destroy the inner lining of your stomach. He suggested that I take Probiotics to help with digestion and to increase the good bacteria in the stomach. And, maybe occasionally take Mylanta or something like it.
I then mentioned it to a friend and colleague (K.) at lunch today and she suggested a supplement called "GI-Encap", which repairs the lining of the stomach. She also mentioned something called HMF-Intensive, which is a probiotic.
So, I will be adding those two to my supplement repertoire. At the moment, I take 1) CoQ-10 (helps your cells work more efficiently for more energy; may also have anticancer effects), 2) Vitamin D-3 (I had low Vitamin D levels and it also has anticancer properties), 3) turmeric (anticancer properties), 4) Chinese herbs (a five-mushroom blend (anticancer), Ji Xue for building blood, Rehmannia and Scrophularia also for building blood (I think), Shen Ling Bai Zhu Pian (to help my body digest the Rehmannia and for digestion issues generally)), 5) melatonin (anticancer properties), plus a 6) Chinese herb for sleep. I also picked up 7) Zong Gan LIng at the co-opera yesterday for "advanced colds". The latter helps with symptoms and also helps to get over your cold more quickly. I started taking it yesterday and I have to report that it really does help relieve cold symptoms, but without leaving my mouth dry from the antihistamines in western cold medicines or making me feel zonked out or tired. I feel normal and there's less stuffy/runny nose and post-nasal drip to worry about. I also think that my cold is already a lot better.
Having cancer isn't cheap. That's where a lot of any "disposable" income I might have goes to. I'm not complaining, mind you, because in general, I have been feeling fairly well lately, with good energy, no pain, etc. But thank goodness for good health insurance and for a full time job.
Monday, November 8, 2010
I saw the plastic surgeon today and ultimately, he said that he would do the lat-flap surgery (use the latissimus muscle under my armpit) and that ultimately the timing of the surgery would be up to Dr. F, my surgeon. So, I'll wait a couple of days and then call Dr. F's office to schedule an appointment and talk about timing.
There's a part of me that wonders if the whole area would eventually heal itself. However, I remembered that the wound probably wouldn't heal as long as I'm on Abraxane. Dr. K would like for me to be on Abraxane for six months, which means that I'd end up with an open wound for at least that long. And, with an open wound comes the risk of infection, like I had last month. I also have a surface infection, too, which looks like a green discoloration on my dressings. It's "pseudomonisis" which is the bacteria that grows in your vases when you have flowers. I've been trying to get rid of it for almost a week now. It got a little bit better after I saw the wound care nurse - as she cleaned the area really well - and even though I've cleaned it with iodine once and have been trying to flush the area with saline, it's hard for me to do this without getting saline everywhere . . . Anyway, I guess I think that that armpit area seems to get infected easier than the other wound I had, so I might as well get the whole thing repaired to decrease that infection risk.
I told Dr. H (the plastic surgeon) that Dr. K (my oncologist) would be willing for me to take about a 6-week break from Abraxane in order to have the surgery, and probably even more so now that my tumor marker dropped so much in just one month, so that there will probably be very low levels of cancer cells running around in my system. Then, after I am recovered from surgery, I would go back on Abraxane to knock the rest of those cancer cells out.
I also asked Dr. H if he could trim the "dog ear" that was left at my beltline from the reconstruction surgery. He said that he would. I also asked if he could drop the implant down to match with the TRAM flap and he said that he'd rather not mess with it, since I have such a major wound on the armpit and he didn't want to open anything else up. If, however, cancer or bacteria got onto the implant, he said that it would have to come out. So, in the end, he said that he might bring in a spare implant and would try to drop it farther down into the pocket, so he might be able to make me more lopsided. That is, if the implant had cancer or otherwise had a risk of infection.
So, in terms of other side effects, I wanted to report that my scalp is now breaking out in zits. It's also pretty tender in some places. Now, I have to figure out how to take care of the scalp - one website said to treat it as you do your face, with milder moisturizers and cleansers.
In addition - and forgive me if this is too much information (Daria at LIving With Cancer also wondered about reporting these side effects the other day in her blog; in the interest of passing on my experiences to other cancer survivors, I'm telling my readers what's going on) - I have had some constipation (from the anti-nausea meds). I have some Chinese herbs from my acupuncturist that seemed to help me become regular again sooner than I did previously. But, last night, my stomach muscles starting cramping again. I think I reported that it seemed to do that the evening of my treatment. But this time, it happened three days later. It's been acting up all day, too. It seems to cramp up a couple of hours after I eat. And, I have had some mild diarrhea off and on all day and the cramps seem to get a little bit better afterwards. So, I started wondering if the cramping was happening in my intestines rather than in my stomach - and that they are cramping trying to get the food processed through my digestive system. So, I'm trying to drink lots of water. And, it's all complicated this time by having a head cold and taking some nasal decongestant medicines. (I am going to do my best to avoid crowds and public places while I'm on Abraxane - I don't need to deal with colds on top of my other health issues!)
So, a talk with Dr. F is in order sometime this week. I see the wound care nurse tomorrow and will also see what she says.
Even though I caught a head cold over the weekend, I was still about to celebrate.
First, on Friday, my family and I went to Riverview Mongolian Grill. My whole immediate family (parents, siblings, Eddie) and my sister's family attended. It was great to see everyone - and we started planning Thanksgiving dinner. Eddie had a friend over for a sleepover, so he had fun afterwards, too.
Second, my parents, Scotty (my younger brother), and Eddie and I went to the coast on Saturday. We stopped in Depoe Bay, first, to go somewhere different to eat for lunch (we went to the Chowder Bowl, which was about like Mo's, where the piece of bread they served with the meal was huge!) and also because it was high tide and there were a couple of spots where the waves were crashing up higher than street level. That's always so cool to see! We watched the spouting horns for a bit and then looked in some of the shops. Then, it was on to Lincoln City, where Eddie played at the Children's Arcade (thanks, dad, for taking him) and mom, Scotty, and I played the slots. Then, on our drive back south, we stopped at a used bookstore and then at Wal-Mart for cheap snacks (also looking for cheap pants for Eddie and for Scotty). Then, we got home about 6:30 or so in the evening. So, a long day, but a fun one! Sorry to report, though, that I didn't win at the casino . . .
Sunday was a lazy day, for the most part, but I did go to K-Mart's Friends and FAmily Day for discounts on clothing and other things. Found a Christmas present or two. We also bought plastic to put on the windows in an effort to keep out the cold and keep in the warmth. It was nice, though, just to hang about home. Got boring things done like paying bills.
If it wasn't for the damn head cold, I'd be dancing in the streets! That is, when Eddie wasn't around as he doesn't like to see me dance! LOL
Sunday, November 7, 2010
I finally had a chance to upload photos from Puttin' on the Pink. This time, the photos are by Randy (Randall) Milstein, a professional photographer. Enjoy!
|Randy had me pose by the canoes at Peak Sports.|
|Now, I'm posting with the sunflowers at Peak Sports.|
|This is the head shot for the Fashion Show.|
|I'm at Sibling Revelry with Roseanne and Jeannie - all of us survivors.|
|Roseanne and me . . . I attended the support group a few years ago with Roseanne.|
|Looking for earrings to go with the outfit at Sibling Revelry.|
|Getting last minute make-up touch-ups before the show.|
|Yikes! My lips are soooo red.|
|I'm doing the shimmy thing on the runway.|
|Trying to be dramatic on the runway.|
|Another pose on the runway.|
|Model Parade after the show.|
|All of models posing for a final picture.|
Friday, November 5, 2010
It's hard to believe that I started this blog three years ago. In fact, I missed my three year anniversary of this blog (it was Oct 15, 2007) as well as the three-year mark for my second diagnosis of breast cancer (October 3, 2007).
At the time, I never thought I'd go through what I've been through. Here's a list:
Surgeries: 2 (bilateral mastectomy and reconstruction) with 1 more planned
Radiation: 6 1/2 weeks to kill the cancer in the skin (June 15 to Aug 1 2008)
Mets Diagnoses: Skin - 2 times (right breast area; left armpit); Lung (3 in left side); Bone Marrow - multiple sites; Lymph Nodes - multiple sites; Liver - potential site?
Targeted therapies - Tykerb (March 2008 to January 2009; April 2009 to Nov or Dec 2009); Herceptin (January 2010 to July 2010); Femara (August 2009 to November 2009)
Chemotherapies - Oral Xeloda (March 2008 to December 2008; April 2009 to July 2009); Abraxane (October 2010 to ??)
Open Skin Wounds - Right breast area (March 2008 to February 2009); Left armpit - August 2010 to present)
Depression - two times when it was hard to lift my mood, when I remember envying "normal" people
Worry - multiple times
But there was good news - I achieved "stable disease" from August 2008 to April 2009). And, it looks like I might be headed to stable disease again. (There are two kinds of remission, one in which a patient is NED or no evidence of disease. And, there is "stable disease", which is me, because I may never get rid of the calcium deposits in my bone marrow since they take so long to resolve and the calcium deposits are evidence of disease.)
I have enjoyed incredible support from family, friends, and colleagues. I have reconnected with high school friends through Facebook. I have grown closer to many people. My son is healthy and doing well. I have "met" several cancer bloggers, a few in person and others just online. These women have taught me how to persevere, how to deal with side effects, how to continue living life to the fullest, how to stay connected, how to approach this disease, and I'm happy to continue sharing in their lives through their blogs.
I also have very good medical care providers, including my oncologist, my radiation oncologist, my therapist, my acupuncturist, my wound care nurse, the UW clinical trial doctors, the infusion nurses, my surgeon, my plastic surgeon, and all the nurses who help my doctors.
I feel that I have learned a lot about diet, alternative forms of healing such as Chinese Medicine, and have started my own spiritual search. In terms of spirituality, I have done a lot of reading and have an eclectic mix of things that I believe in. I have had some experiences, too, that can't be explained. I feel like I am healthier mentally and emotionally than I've ever been before.
It's really been a roller coaster ride. It's a metaphor that is probably overused, but at the moment, I can't think of another way to describe it. The truth is that there have been highs and lows. But through my learning of how to cope with this disease, I've learned how to cultivate happiness. I have learned to create gratitude lists. I focus on what I have rather than what I don't. I make a choice each morning deciding that I will be happy. I don't always succeed, but I never feel guilty about that. I do, however, try to let the bad feelings pass through me, now, rather than hold on to them. I feel, though, that with all that I have learned and the recent treatments I have had, I may be poised to enjoy a long period of remission. I have some work to do to enable that - like trying to not eat sugar in my diet (which feeds the cancer) and to practice qigong and meditation more regularly. But I'm getting there.
I wish I could've learned all these lessons without having cancer. I would never wish this on anyone. But that's not the way it turned out. As I'm found of saying nowadays, "It is what it is." Not much I can do about how it happened. I do have control over what will happen next, which is to live a good life and to continue learning how to be a better person.
Because life is good. And, I'm thankful for it and for all the support that I have received. Thank you for reading the blog. Here's to 30 or more years of it, huh? : )
Thursday, November 4, 2010
That is a 34 point drop from last month.
Anything 3.8 or less is "normal".
The last time it was this low was a year ago. In November 2009, it was 7.6.
Cause for celebration, eh?
I had zometa and Abraxane. Maybe I should say, it's an "A to Z" Day. I also had good blood counts - my hemoglobin was 11.1 thanks to the blood transfusion.
Anyway, here is the history:
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
10/05/2010 - 41.6 ng/mL
11/04/2010 - 7.1 ng/mL
Ce-le-brate good times, c'mon! It's a celebration!
We like downward trending numbers! : )
Wednesday, November 3, 2010
I was at work for over seven hours today. That's the most I've been there in a long long time. I got in about 9am, was supposed to meet with a student, but he didn't show, then prepared for class, had class (shared some dry fish from Unalakleet), then was on a teleconference call until almost 3:45.
Then a former student came in to the office to visit. She was only in one of my class in Spring 2009, but I guess she wanted to see how things were going. Turns out that last fall, she found out she had thyroid cancer and had surgery. Her hormones are a little wonky now, but she felt like they were working to get it under control.
After I got home, Eddie and I walked around the block because it was sooo beautiful here today. It was at least 70, sunny, with blue skies. He doesn't have school this whole week, so that's why I was able to stay at work longer. I wanted to walk with him so we can chat and get caught up. We both got some fresh air. I needed it because I was a little snippy. I was feeling a little pressure from work . . . still trying to get caught up with paperwork as well as a grant proposal. Sigh.
Then, after a quick bite at home (thanks to dad for cooking), I met some friends at a local brew pub. It was mostly members of the old co-ed softball team from (gulp) 19 years ago! But for some reason, one of the newer members of the team bought my lunch - thanks, J!
I got home at 8:30, after stopping at Blockbuster to rent Charlie and the Chocolate FActory for Eddie. Also found one of those 3 for $20 deals and got Letters to Juliet (for me), Percy Jackson (for Eddie), and The Invasion (for my brother).
All in all, other than about an hour and a half at home, I was on the go for nearly 12 hours. I am tired, but I don't think I overdid it. It just feels nice to have had a "normal" day!!
Tomorrow, I get a pedicure and then it's time for Abraxane. I hope to get some of that paperwork completed!!
Monday, November 1, 2010
Eddie and I went to Bend for the night this past week-end. My friend, B., and her dog, Shika, joined us for the drive over the mountains. Shika spent most of her time hanging out next to Eddie or with her head in her lap while Eddie played on the iPad on Shika's head. It was cute. They seemed to really bond. We stopped at the summit and played in the snow for about 30 min. Well, Eddie and Shika played. I had to rescue his boot from the snow and ended up with snow in my own shoes! : )
We had lunch in Bend on Saturday with B. and B.'s cousin and her husband. B's cousin is a quilter and has the most amazing quilting machine that cost $35,000 used. But it's saved her in this economy as it became her primary source of income in the recession. And, her quilts are beautiful.
Then, we went to my friend's house and got to meet her baby! We relaxed for a couple of hours and visited and then I took Eddie to Sun Mountain Fun Center. We played in the Arcade and then rode the Go-Karts and then the Bumper Cars. Fun fun fun!
My friend and I got to talk shop - we work in the same area in Alaska and have coauthored two papers together. We are working on a grant proposal, too, that's due in a couple of weeks. So, in that sense, it was also productive for work.
On Sunday, we had brunch in downtown Bend and then walked around Drake Park before it was time to pick up B and Shika and head home. Thank you, Bend B., for having us as guests, and thank you Corvallis B. and Shika for keeping us company on the drive over the mountains!
All in all, a good trip! Made even better by the fact that I can go 24 hours or more without changing my dressings! It's no longer leaking through! Also, the wound changes almost daily. It seems more of the satellite lesions are shrinking and have disappeared. The outer layers of skin are collapsing a bit into the cavity made by debriding the dead tissue. I can sleep on my side. I almost don't need to take Ibuprofen or Tylenol anymore for pain. My day at work went well today, too. I think I'm finally getting caught up! : )