I stayed home this morning, but worked on a grant proposal because the deadline is tomorrow. I drove to Eddie's school and then walked to lunch. I was supposed to have lunch with a colleague, but he forgot, so I had my Thai green tofu curry with veggies alone, which was fine. I ate the whole lunch - all the rice, veggies, and tofu. Then I walked to my office.
My legs have felt shaky all day and within an hour of getting to my office, was hungry again. I finally went to the bookstore and bought some cookies and tootsie rolls. I have a craving for carbs - I figure my body is trying to fuel something!
I finally found a file I'd been looking for off and on for a couple of weeks. Then, it was a matter of organizing the papers - someone requested a copy of them. The papers were applications for doing research with my King Island community. I figured I needed to figure out what was in that file, too, to get a better handle on all my paperwork regarding the King Island placenames project.
I had some other emails and such to deal with, so I didn't quite make the copy I needed to. I'll get to that tomorrow afternoon.
I walked back to Ed's school - then we stopped by Blockbuster before coming home. By the time I picked him up, I was exhausted. I've been feeling exhausted all afternoon and evening.
I was also achey - my legs and lower back and a bit of a headache. My neck and shoulders are tight, so I know I'm carrying some stress about this proposal.
I've worked on the proposal off and on since. Had a break for dinner - mom made "Aakauraq's soup" - a hamburger and veggie soup with noodles. And, fresh baked bread. I think I ate half a loaf in addition to a bowl and a half of soup.
So, I'm eating healthy foods - veggies, curry, tofu - but also a lot of carbs.
I also took a hot bath to work out the achey muscles. Then I discovered that I didn't take my herbs and Ibuprofen this morning. Sheesh - that's probably why I'm so achey. But I also probably overdid it today. Holy cow. I hope that next time I have a treatment, I can really truly take it easy for a few days. Holy cow I'm tired.
The hot bath definitely helped, but now it's back to this proposal. It's close to being completed. The purpose of it is to organize all the data related to the King Island placenames project. If it's funded, most of our Corvallis based research team will help me organize the data. Wish us luck!
Wednesday, March 31, 2010
I stayed home this morning, but worked on a grant proposal because the deadline is tomorrow. I drove to Eddie's school and then walked to lunch. I was supposed to have lunch with a colleague, but he forgot, so I had my Thai green tofu curry with veggies alone, which was fine. I ate the whole lunch - all the rice, veggies, and tofu. Then I walked to my office.
Tuesday, March 30, 2010
I had my fourth Herceptin treatment yesterday. Then, after a quick lunch, I went to campus for about an hour and then came home. I started getting more fatigued afterwards, but it was progressive - okay at first and then more and more tired. Last time, I tried to walk from my son's school to my office, but this time, I parked in the paylot across from my building. My legs were a bit shaky, so I thought it was best.
By last night, I was tired, but sorta giddy silly tired. I kept thinking about what Joanna (at "Life Has Its Ups and Downs") told me last time: that my fatigue is indication that Herceptin is working against active cancer cells. I thought, "go for it, Herceptin, do your thing! I won't tax my body so the drug will do its trick".
This morning, I felt pretty groggy. My eyes felt heavy, even though I slept about 8 hours. I took Spagedward to school and then came home, did some work/email/facebook, snapped at the cat - and dad caught some of it, too - when the cat attacked my hand, took a shower, realized just how close my emotions are to the surface (either 'cuz I'm tired or mood swings or something), then played on the computer some more before going to work. I wanted to stay home, but today was the day that a potential grad student was able to come to campus for a visit. So I met with her and then had to introduce the course I was supposed to teach - the person we hired to teach it in my place couldn't make it - my legs were shaky. So, I did my thing and then picked up Eddie.
On the way home, I felt like I could take a nap. But I hate naps. After doing some checkbook balancing, my neighbor stopped by. The poor lady really has no support system, but on the other hand, she kinda drives me crazy, so I understand why she doesn't have many friends. She told me about some legal problems, but her story changed slightly each time I asked her a question - the story was convoluted and the only thing I kept thinking was, "Man, I do not have energy for this". In the end, my dad and I decided she just needed someone to talk to.
But, holy cow, why me? Why today? Ah well. Such is life.
Dad cooked a delicious dinner - pork chops with potatoes and carrots. I've been hungry all day. I figure my body needs extra calories to help Herceptin do its thing against the cancer.
In the meantime, travel plans have been settled for next week-end. Dad, mom, Spagedward, and I will drive to Port Orchard, WA, on Saturday morning. My dad's sister, Aunt Judy, lives there. We'll hang out with her and her husband for awhile, and then Eddie and I head to my old high school friend's house in Bremerton, where we'll stay the night. My old high school friend, S, has two boys, ages 9 and 6. I worked for S's dad for almost three years in the high school and we were friends throughout that time. I haven't seen her in nearly 25 years. Wow.
On Sunday, we'll pick up mom and dad and take the ferry across Puget Sound to Seattle. We'll stay the night in Seattle and Monday morning, we'll go to my first appointment at the UW Tumor Vaccine Group.
So, at least my first trip north will be fun, full of visits with rellies and old friends. I think it bodes well, dontcha think?
Monday, March 29, 2010
Don't worry - nothing bad has happened to me! My family and I went to Bend, in Central Oregon, for the tail end of spring break. My sister and her two kids, my youngest brother, my folks, Eddie, and I (and my folks' dog, Mimzi) all went.
We rented a house near the south end of town. My sis went shopping. One night, my brother and I took the kids to Sun Mountain Fun Center and another night, my sis took them all. The Fun Center was fun - I liked riding the go-karts and the bumper cars. Eddie enjoyed the Arcade.
Eddie tried to ice skate one night, but it was too hard on him because his ankle ligaments are so loose and relatively weak.
We went sledding on Saturday - beautiful gorgeous Central Oregon day! It was sunny and about 50 when we finally found snow. The kiddos spent an hour and a half walking up the hill and sliding down. Earlier that day, my folks, my brother, and I went downtown and looked at antique shops, grabbed lunch, then went up to COCC (Central Oregon Community College) and walked around. Campus was closed for spring break, but it was still fun to walk around in the sun and see the mountains through such cloudy beautiful skies.
So, it was a fun few days, a busy few days. I was tired last night but got a good night's sleep. Later today, I have a Herceptin treatment. I plan to bring my computer and post some pictures and work on a proposal.
Wednesday, March 24, 2010
The last two days have been beautiful here in western Oregon. I've enjoyed the sun and seeing all the flowers bloom. Love that!
Spent the last couple of days running around - had an acupuncture, physical therapy, and counseling appointments the last couple of days. Had other errands to run. Did a few things with Eddie.
Last night, I was up until 1am working on a grant proposal. Hoped to get back to it today, but was too busy.
Tomorrow, we head to Bend for three nights. Yay! It'll be fun to be in different surroundings and have a change in routine. My sister and her kids, my folks, my youngest brother, Eddie, and my folks' dog are staying in a 4-bedroom, 3.5 bath house (got a good deal - Bend has been hard hit by the recession, so things are relatively inexpensive) with a hot tub. We may play in the snow. We will definitely go hiking. We might find a family fun center - I think there's one with go karts. That'll be fun.
Since my siblings and I went to high school in Central Oregon, we may also visit with old friends. I know I will definitely see a friend who came to see me before the holidays. L and I first met when we were 10, when we first moved to Prineville.
I'll have to bring some work with me. But it'll be relaxing. I love to change up the routine. Enjoy the rest of your spring break!
Monday, March 22, 2010
I want to share with you subsequent visit dates for the UW clinical trial, and another donation.
I have scheduled the dates for my subsequent three visits. They are June 1-3 (probably three nights), June 10, and June 17. I will contact the national ACS office for additional hotel stays. I didn't realize that they would wait me there on June 1, 2, and 3, until today. (I already have visits scheduled for April 5, 12, 19, and May 3.)
When I went to double-check the protocol earlier today, I saw that I will have three additional follow-up visits at one-month, two months, and four months after June 17. Holy cow! I thought that they said that I might be able to do those follow-ups down here, but will double-check that. So, for now, I will leave those dates out of an updated version of the budget.
7 visits (April 5, 12, 19, May 3, June 1-3, 10, 17) = 9 nights x $200/night hotel = $1800
7 car/train trips @ $100-120 each = $840 minus one trip to use Airlines certificate = $720
16 days (April 4-5, 11-12, 18-19, May 2-3, May 31-June 3, 9-10, 16-17) @ $50/day = $800
taxi/parking for 9 days (study visit dates) @$30 (not sure if I will need that much) = $270
Total = $3590
So far, I have received:
-four hotel nights for the first four visits to UW (April 5, 12, 19, and May 3) = $800 from the national ACS office in Arizona
-a $200 gift certificate to Alaska Airlines
-a $200 gas card from Komen?
-and $1100 from you/Cancer Center
- pending hotel visits in June (5 nights) from national ACS = $1000 (I need to request these yet)
Total Received = $3300 ($1800 hotel, $200 air, $200 gas, $1100 cash)
Based upon this budget, I am about $290 short. I guess it depends on whether or not the local ACS office has a gas card for me, too. Then, I think the visits from April to June will be covered. I can also probably cut corners here and there to make it all work. In the end, a majority of the visits have been covered.
I am humbled by the generosity of ACS and of my friends. Thank you all!
Speaking of which, I had a couple people offer to drive me up and back. I thought that it might be fun if I have a mix of people help out.
So far, I think my folks will go with me on the first visit on April 4-5.
My friend Amy and I talked about her joining me on April 11-12.
If the vaccinations I receive leave me with little side effects, then I might use the Alaska Airlines gift certificate for the April 19 visit. However, if someone else wanted to drive, then maybe I would use it for one of the June visits.
I might ask my folks to drive me for the May 3 visit as I will be having my t-cells removed.
I might also ask them to help for the June 1-3 visit as I will be getting chemo.
June 10 and 17 I don't have a plan. If I don't use the Alaska Air ticket for April 19, then I might use it for one of these visits.
Sunday, March 21, 2010
We went on a walk/hike at Oak Creek today. We were "lichen" the facial fur of Miss Finn and Miss Cat:
Good thing it "shaves" fairly easily!
Miss Finn "trimmed" her 'tache and had a goatee. We were "lichen" that.
After we were lichen the lichen, Mudedward had some mud fun.
More mud fun:
Mudedward is grinnin' after some mud fun in the sun:
Mudedward loves the mud!
Afterwards, I asked Mudeddie what he thought of the day. His reply? "The mud bath was 5 million % fun; the hike was only 10-15% fun." So, I replied, "if you average the two, you had 2.5 million % fun!"
An hour later, one kiddo in the bubble bath, and two soaks and a washing machine wash later, everything's clean again! Totally worth it for the 5 million% fun he had! Priceless!
As a result of reading this book, Anticancer, as well as visits with my physical therapist, I've tried to make some changes into my daily routine and diet.
I've been eating at least one tablespoon of flaxseed with cereal or on my toast in the morning. The author of Anticancer advocates 2-3 tablespoons a day. He also says that 2-3 cups of green tea are part of an Anticancer diet - I'm up to two. I have a caffeinated version with breakfast and will have a decaf one in the evening. I have incorporated at least a cup of soy each day, either as milk or in tofu. I already take turmeric as a supplement but a few times a week, I try to have a curry. I need to incorporate blueberries more often, but I eat something with blueberries at least once a week as well as dark chocolate. I have a bottle of red wine and over the past week, I've had two glasses. I'm trying to eat more veggies, especially colorful veggies. He also says we should eat "stone fruits" which are things like peaches and pears. I need to bring them in still. He also says that eating things in combination with each other is more effective than eating them singly, so my breakfast is a multigrain cereal with soy milk and ground flaxseed with a cup of green tea. The ground flaxseed has blueberry, cranberry, and strawberry bits in it.
My physical therapist said that I should do my stretches twice/day. I find that that's hard to do. So, I do them at night and have incorporated them into my nightly before-bed routine that includes qigong. I think it helps. On Friday, the palm of my hand started tingling a lot, like it was falling asleep. I kept shaking it to try to wake it up, but that didn't help because the nerve is constantly being compressed with the swollen lymph nodes. What helped was stretching. Once I stretched my left arm, it felt better.
I guess I find, that for me, it's better to start slow and incorporate one or two new things into the routine and once they become routine, then add something else. So, that way it's gradual - and pretty soon, I don't notice it. If I were to go all out, it would be overwhelming. So, a little bit at a time.
I've been trying to phase out sugary candies and processed foods, including industrialized meats and dairy products (meaning, meat and dairy products that have hormones and/or are fed corn syrup and other products to increase productivity, instead of natural range beef and dairy).
I think our whole American society needs to change our diet - like the new TV show called Food Revolution (I think). Yesterday, as I walked around the amusement park, I noticed that at least half of the people (if not more, sadly to say), including children, were overweight. (I noticed this, too, when arriving at the Minneapolis airport after living in London for a few months in 2005. It's really sad - and then I get pissed off at the toxic way that large industrial farms have harmed our diets.) The author of Anticancer says that nutritionists have called the obesity epidemic in this country an "American paradox" - since the 1980s, we have greatly decreased the amount of fats in our diet and yet our society, on average, has gained weight, not lost it. He cites a lot of research, that convinced me, that this is due to the fact that our diets now have about five times as much Omega-6's in our diet due to these processed foods - the amount of sugar and corn syrup in our diets and even in the diets of our meat and dairy. The Omega-6's are "inflammatory", causing an increase in heart disease, diabetes, obesity, and cancer. The idea is to create balance in our diets again by decreasing the Omega-6's and increasing the Omega-3's, found in the anti-inflammatory foods such as flaxseed, soy, blueberries, fresh veggies, green tea, curry and turmeric, and red wine.
Since my last post, I've been busy. At work, I've been putting together a couple of proposals that are due March 29th and April 1st. I spent most of Thurs and Fri in email discussions about both of them. One is an internal OSU opportunity - it's a long shot for me because I think they usually target more advanced scholars (people who have published more), but I figure, what the heck? It's to help advance an idea of my friend in Hawaii . . .
The other is a proposal to help organize and manage all the King Island data that was collected over a few years. We had a lot of people recording data and now have had three or four maybe five trips going back to double-check data. So, it's all over the place and it's hard to put our fingers on something when we need it. It's involved a lot of discussion between interested parties - lots of emails and phone calls to make sure everyone's on the same page. This project has been hard in terms of trying to manage it; so many people have been doing a variety of work on it that I've lost track of where things are. I don't know that many of them appreciate how difficult it has been because other work activities crop up that need immediate attention. I think that next time (if there is a next time, LOL), I might hire a part-time (20 hour/week) person to keep track of just that project. That will be their sole responsibility. My problem has been that not only am I trying to manage the project - keeping track of about 7 or 8 people and the data they collected - I'm also trying to keep track of my own set of data on this project AND three or four other projects, each of them ranging in size from small (only I can do them) to large (collaborating with two other groups). For the latter project, I've also had four and will soon add another student working on it. They've all worked on pieces of it. I'm hoping my current Ph.D. student can get a handle on that data this term.
So, now that I've exhausted both you and me, I will report that to clear my head on Friday, I finished gluing the tiles onto my new mosaic. That took all evening - from about 3:30 to 8:30pm with only about an hour break for dinner. Now, it just needs to be grouted and also maybe put an edge on it. That may happen after Eddie and I go for a hike today with Cat and Kai and kiddos and furries (dogs, that is).
Yesterday, after lunch at a local pub with the fam, I took Eddie to the Family Fun Center in Wilsonville. He tried the "Sky Trail", which is an obstacle ropes course at least ten feet above the ground. He had one nerve-wracking part - he was wearing a harness so he wouldn't have fallen to the ground - but he made it through on his own. I called over an attendant to watch him the last half of the trail.
By the time we got home (we waited in line 30-45 minutes three times - twice for the Bumper Boats and once for the Sky Trail), I was tired. At least we got to go out into the sunshine and fresh air! Dinner was waiting for us when we got home - spaghetti! A lazy evening watching television rounded out the day.
Eddie is in the back on the right of this picture - twice, he chased girls around his age and squirted them in the boat.
So, today, a hike. Maybe grouting. Tomorrow, Eddie leaves to go to the coast with his dad for the night. I'll spend Mon and Tues finishing up these proposals. Maybe I'll work on one or both of them this evening if I'm feeling up to it. We'll see! We might get drizzle today, but the fresh air will still be good for us. I need to get this kind of work done this week because I expect that I'll be wiped out next week, after my next Herceptin treatment (just so you know - it sucks to have to plan your life and work around periods of good energy and known periods of fatigue - just so you know).
Wednesday, March 17, 2010
I heard today from the local cancer center - and on Monday from the national American Cancer Society - that I will receive $1100 from the local cancer center (for train/gas and food) and four free hotel stays for the first four visits. This plus the $200 Alaska Airlines gift certificate rounds out the total donations to about $2100. We are still waiting to here from the local chapter of ACS about whether or not there is a "gas card" available as well.
Thank you to everyone who is supporting my travel in this way - or if you have supported the ACS in the past with donations. It is very much appreciated!
In other news, I saw my physical therapist on Monday. She did some great stretches on my right shoulder (maybe some impingement but definitely some capsular contraction) and also stretched my left arm to help with the cording under my left arm pit.
She reports that the experts aren't quite sure what it is - and as Daria noted in her post - it's also referred to as Axillary Web Syndrome. It has something to do with the lymph channels causing the tissue to seize up in a cord - or something like that. She said that in the literature, it usually relieves itself but in the meantime, it could get more painful. The best thing to do is to stretch it - or get rid of what's causing the cording in the first place.
So, I had an appointment with my oncologist's physician assistant/nurse on Tuesday to ask about options for getting rid of the swelling in the lymph nodes. My colleague thought that maybe a fine needle aspiration would do the trick. In the end, they say they don't like to do it - that it's probably a mass rather than fluid and they are afraid of cancer getting into the skin since the needle is going through the skin. She did say that I can start taking an NSAID to help with swelling and that it would be okay to have the physical therapist move some of the fluid around the area to encourage the lymph nodes to drain using massage. She was going to call my physical therapist and tell her that that was okay. I am getting a back-up of lymph fluid on my upper left arm - it's becoming a little tender to the touch. So, stretching, ibuprofen, and some massage for now.
In other news, the fatigue has lifted. I feel normal today for the first time in over a week. The fatigue started lifting toward the end of last week, but then the time change messed up the length of time I could sleep, so I was tired. Finally got a bit caught up last night. Good thing, too, because there is a lot going on with work - applications for this or that opportunity for funds to keep momentum going on various projects. Whew.
Monday, March 15, 2010
I heard back from the American Cancer Society today - I will get a free hotel stay the night before my treatment at UW for the clinical trial. Yay!
Thank you ACS! And, thanks to all who donate money to this organization!
Sunday, March 14, 2010
I started a new mosaic today. I'm tentatively calling it "Riding the Waves". It's a series of five waves on a beach - mainly because my heart rests at the ocean. If I could afford it, I would have my own place at the coast.
Anyway, the mosaic, as it's posted, is sideways. It will eventually be a bench to sit on the deck I also hope to build this summer.
Each wave represents a human member of our household - and our names are written in small beads around the top of each wave, in order of age going from left to right.
There are some tan-colored beads within the waves - a few garden bugs including a dragonfly (my dad's favorite), a ladybug, and something else. There are also words including faith, love, joy, laughter, and trust. I interspersed them in our waves as well. I took faith - to signify that I must have faith to heal myself. I put "laughter" in Eddie's wave.
There's a sun shining on our waves and also two rainbows in the sky.
I'm still working out the details . . . I hope to finish it soon!
Last Wednesday, I saw a physical therapist, primarily to increase range of motion in my right shoulder, to get some stretching exercises for the right shoulder and my left armpit, and to increase strength in my core (from the release of the TRAM flap).
One thing she commented on was that the swollen lymph nodes in my left arm pit have created "cording", which is like a hardened cord that can be helped with stretching. So, my therapist (who I worked with 20 years ago, around the time I started my graduate program in anthropology), stretched that area. It was painful, but now I'm mindful ti keep stretching.
Then, I remembered that Daria, at Living with Cancer, mentioned cording last summer. Apparently, this can be a side effect from chemo treatments; I would argue that it's a side effect from the swollen lymph nodes as well.
I see my physical therapist again tomorrow - and will ask her for more information about cording.
Since this has happened to me, I wanted to share this link to a post entitled "Cancer made me beautiful" by Ann in Sacramento.
Several times a week, people say to me, "you look great!" or "You're looking good!". And, I thank them but I do wonder things like, "What? Do you expect me to be at death's door?" And, sometimes, "Well, maybe I look great but I'm tired as all-get-out. And, the swollen lymph nodes under my left armpit (or the lymphedema or healing fractured ribs on the right side) are painful."
It always surprises me because while I try to cultivate happiness by being mindful and aware of each moment, I'm not always happy (my family can attest to this). I worry about finances and I worry about whether or not I can do my job (expending energy teaching is a case in point).
I imagine it's hard for people to figure out exactly what to say to me - this was something my therapist and I talked about last week. There are times when I want people to treat me normally - and I expect myself to try to live life as "normally" as possible. I want to be normal. I don't want to admit that I have limitations to my activities because of cancer. That pisses me off.
On the other hand, I have to be realistic and so I have to communicate to my volleyball teammates that I don't think I can play at the moment - and I feel like I have to make a case to prove to them why I can't. I have to ask my chair to give me sick leave so that I won't have the weekly energy drain that teaching brings - and again, I have to "prove" that I'm "sick enough" or "tired enough" to justify taking the sick leave.
I imagine sometimes that my friends and colleagues don't know what to do because my asking for sick leave (or whatever) runs counter to the way I look and to the way I want to be treated because I want to be normal. So, then I get pissed because I don't think people believe me because I "look great" - if I "look great", I must be a charlatan to want sick leave. So, while I look and act normal most days, I really do need these special concessions and I don't want people to second-guess me.
To get back to Ann's post, she says that she likes it when people tell her she's beautiful. I guess I do, too. It means that my efforts to live life in the moment and to cultivate happiness are working. But I really do need to take some sick leave (not all the time, but after treatments) and take care of myself. I'm not sure that that helps people with the dilemma of how to interact with me . . . but maybe this helps people understand me more.
Saturday, March 13, 2010
I keep forgetting to post this - but there's a prescription drug take-back event happening today. The organizers say, "This statewide turn in event is an opportunity for your community to take their unwanted drugs to a central location for incineration. The Take Back Event is sponsored and spearheaded by the Oregon Medical Association Alliance, CARSA, Oregon Partnership and other community groups."
The link to the event is here.
This group is concerned about the danger of prescription drug abuse, but there's also several groups concerned about the danger of flushing these drugs down the toilet, where they can get into our water system.
Until the Oregon Board of Pharmacy releases the rules for the Charitable Prescription Drug Program, this incineration is a better way to get rid of your unwanted prescription drugs. I have two or three prescriptions that I need to get rid of . . .
One take-back site is in Albany, at the Albany City Hall. The other is in Eugene - we're heading to Eugene today for the Home and Garden show, so I think that I will take my own drugs there . . .
Happy Saturday - the sun is peaking through clouds for the first time in several days, so I hope to get out and get some Vitamin D.
Friday, March 12, 2010
According to Chinese Medicine, our bodies have energy meridians and the idea of treatment is to encourage the free flow of qi or energy.
I've been seeing an acupuncturist for two years and have learned several qigong forms from her - and qigong is again encouraging the free flow of energy.
In Deepak Chopra's book, "Reinventing the Body, Resurrecting the Soul", he says that we should think about our bodies, not as material, physical entities, but rather as energy. He also says that our physical bodies are the interface between the material and spiritual worlds.
So, in trying to heal myself of this cancer, I have adopted the viewpoint that I and my body are made of energy and I try to do things that encourage more energy coming into my body so it can fight the cancer and to counteract the depletion of energy that cancer treatment entails.
To some extent, my desire NOT to teach is a reflection of my current goals with regard to my health: teaching takes a significant amount of energy for me because I'm innately shy. It's a performance. Teaching involves me having to be somewhere at specific times each week. I have so many appointments anyway - I am soo soo scheduled - that the thought of having to do ONE more thing each week is exhausting. It takes energy.
But even though I was tired again today (didn't sleep well last night - partly because of the pain from my swollen lymph nodes - I couldn't get comfortable because I think the lymph nodes are pushing on the radial nerve running up my arm and causing a little bit of stinging and pain going up my arm), I went to a reception for this Environmental Humanities initiative because I am really really interested in it and excited about the possibilities that could come of collaborating with colleagues all across campus. I met a lot of these people for the first time back in November and I hoped to get a chance to chat with them again. Interesting people doing fascinating work. I love these kind of brainstorming, interdiscplinary discussions. So, I showed up tired and came home with energy and a good feeling. I told one of my colleagues (who is one of the people spearheading this initiative) about my decision to do FMLA and her reply was that I need to just concentrate on things that give me energy and so I cried a bit and said that that was why I showed up at this reception. She understood. She was happy that I won't have to teach come spring term. And, she told me of another opportunity that could result in giving me energy . . .
So, the reception was a good thing - more net energy came my way, helped along because several of these colleagues know my medical situation and I know that I can count on their support. This is when I love my job.
Wednesday, March 10, 2010
One of my classmates from high school, K., posted the following comment on Facebook after I posted Joanna's comments about Herceptin and fatigue - the fatigue comes from dying active cancer cells because Herceptin is attacking them.
Good news! Kind of like scrubbing bubbles in your body. Cleaning out all the nasty cancer cells!!!
I love it! Do you all remember that commercial? I think I may have to color or create a mandala about scrubbing bubbles!
Hilarious! It sure gave me a chuckle.
That's what friends are for, eh? Making your load lighter with laughter!
So, in Monday's post, I said I was sad and angry at my colleagues for not supporting my idea to take sick leave for spring term. Well, it turns out that one person was too busy with something else to really hear what my request was and for the other, the person didn't quite realize how much the Herceptin treatments impact me - nor did that person really have a full understanding of all the side effects that I have. When I showed him how big the swollen lymph nodes under my arm are (if you cup your hand like you do when you're swimming - the volume of your cupped hand is what the size of the lymph nodes are), he visibly looked a little bit shocked and then said, "and that's all bad stuff?" and I said, "yes". I reiterated how exhausted I felt and how worried I was that I wouldn't be able to perform in front of the classroom on a regular basis - that one out of three weeks, I'd be exhausted - and I think he finally got it. I guess I talk about all my aches and pains and fatigue all the time so I tend to think everyone has the full picture. But on any given day, I might only talk about one or two things. I think this was the first time that my colleague knew about the whole picture - and then understood.
I also thought to ask our office of Women and Gender Equity about FMLA and the associate director looked at me (and congratulated me on the Phyllis Lee Award from January) and said, "You've been working full time through all of this? It's about time you applied for FMLA!" I responded that last year my tumor markers were good and I had good energy so I didn't see the need. However, this new treatment of Herceptin is really affecting my energy levels and I don't see how I can teach ten weeks, when every third week I'm suffering from fatigue. She said that I can file for FMLA, which allows me to take 12 full-time weeks off without getting fired, but I can also do a part-time FMLA and extend it to 24 weeks or whatever the case may be. And, I can use what sick leave I have to cover it.
So, we're filing for FMLA - that ball is rolling - and the department is thinking about their options with regard to the class. I don't mind helping with the class - I just can't take full responsibility for it.
Also, in other news, I heard from the American Cancer Society today - they work with local hotels and usually can offer me a room at no cost, so that's in the works. There's also the possibility of getting a "gas card" - a credit card to pay for gas.
Anyway, the pieces are falling into place . . . I'm just glad we had a month or so to work on things and am relieved that my department is willing to work with me on the leave ...
Lessons learned? That communication is very important. That I can't assume everyone knows everything. And, that there are always options.
Have a great evening - enjoy American Idol! BTW, my favorites last night were Crystal and Siobhan. Wow! I think Crystal sang Tracy Chapman's song better than Tracy Chapman!
Tuesday, March 9, 2010
I just sold my organic wool mattress topper - it was twin-sized that was on Eddie's bed. I've been trying to sell it for a couple of months.
I also got the newest tumor markers - they only take them every six weeks. Here are the numbers:
Here's the CA15-3.
Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Aug 3 2009 - 29.7 U/mL
August 31 2009 - 31.9 U/mL
Oct 3 2009 - 38.7 U/mL
Nov 2 2009 - 36.4 U/mL
Nov 30 2009 - 38.5 U/mL
Dec 28 2009 - 37.5 U/mL
Jan 25 2010 - 33.8 U/mL
Mar 8 2010 - 30.9 U/mL
I'll post the CEA numbers. Anything 3.8 and under is "normal".
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
So, the CA15-3 went down by almost 3 points (maybe it was 30.7 U/mL), but the CEA went up 9.7 points in 10 weeks. My colleague found two articles about the CEA that says that a "spike" in the CEA does not mean disease progression. In fact, it might mean that the treatment is working since the CEA works on cells in the pre-embryonic stage and so the CEA measures the amount of dead cell matter.
My question is whether or not the numbers here constitute a "spike". From October to November, the number went up 1.9 points for 0.475 points per week. From early November (the 2nd) to December (Nov 30), the CEA went up 2.9 points, for an overage of 0.725 point increase each week. From Nov 30 to Dec 28, the CEA went up 2.7 points for 0.675 points per week. Then, from Dec 28 to Mar 8, it went up 9.7 points in 10 weeks, for an average of 0.97 points each week. Is that a spike?
Perhaps. Maybe in light of the fact that the CA15-3 went down 3 points combined with this "spike", I could interpret the numbers as indication that the treatment is working. However, my left lymph nodes don't feel like they've decreased in size. Does this mean that there's active cancer running around? Or, my body trying to flush the dead cancer cells out of my body?
In the meantime, I have sent paperwork to the UW Tumor Vaccine Group, that they will use to apply for travel funds for me from the American Cancer Society. I also talked to my local cancer center and so far, the Chaplain's office plans to give me $100, they have travel funds for clinical trials from the American Cancer Society via the Komen Race for the Cure Foundation, and they have some funds as well.
I estimated how much travel would be for one trip to Seattle and came up with about $450. That includes $120 for a train trip, $100 for food for two days, $200 for a hotel (unless they can get me a discounted rate) and $30-50 for taxi.
I have seven scheduled trips to Seattle - 7 x $450 = $3150. Yikes, huh? Let's hope they can come up with funding!
My scheduled dates are:
April 5 (4- hour visit, including informed consent process, history/physical, vaccine)
April 12 (vaccine)
April 19 (vaccine)
May 3 (leukapheresis - a four hour procedure in which they take out white blood cells)
June 30 or July 1 - I get my own white blood cells back via infusion.
July 8 - white blood cell infusion
July 15 - white blood cell infusion
However, if I am able to take sick leave during Spring, then maybe I can get my white blood cells earlier, over three weeks in June.
In other news, the King Island Native Corporation may want me to come up to their annual meeting next month to present on some of the work I've done. It'll be kind of hectic because it's on April 24, so there'd be a lot going on . .. I have to think about that just because of the timing.
Today, though, I was tired tired tired. I was okay for the first appointment and lunch, but I got more tired for the second meeting. And, I have successfully got more tired. So, tired that it's hard for me to focus on small print. So, I'm signing off - gonna watch American Idol - but maybe from bed. Good night!
Monday, March 8, 2010
As soon as I leave Ambulatory Infusion today, I felt really tired. I came home and ate lunch and then perked up a bit but by the time I walked to my office, I felt tired again. I got to thinking that the day after my next treatment, I would have to teach two classes - one an overload class and then another class that's been scheduled for awhile.
I was to co-teach the overload class, but when I talked to my colleague, we decided that it would be best to wait until next spring. Whew. That made my spring load much easier!
With the other class, we are close to having to cancel it because we have these new mandatory minimum enrollments. We need 15 and there are only 10 signed up. I got to thinking that maybe, just maybe, if the class were canceled, I could take the time I would need to teach that class as sick leave (and not replace it by another class) and that way, I'd have less stress and could devote more of my time and energy to the UW immunotherapy trial. I tried broaching the topic by the powers that be . . . and I don't feel that I got enough support for the idea.
That made me sad. It made me feel like my colleagues don't appreciate enough of what I'm going through emotionally and physically. Then, the sadness turned into a little bit of angriness.
It's not like I've been sitting on my laurels. This is what I worked on these past two months: I have been attending meetings on the new longhouse, am on the longhouse advisory board, the department's personnel committee, the assess/refresh committee, the cultural concentration committee, and the department's NAGPRA committee. I served on an external review committee in Victoria,BC. I reviewed an article for publication in the Ecology of Food and Nutrition in December; I am writing a review for Museum Anthropology; I have to review a proposal for NSF Arctic Social Science. I am collaborating with indigenous colleague on the indigenous GIS workshop proposal to NSF; I am writing a proposal to NSF to bring students to the indigenous place names conference in Norway; I wrote a Center for the Humanities proposal and an Honors College proposal; I've written recommendation letters for several current and former students. I have interviewed one and contacted six or seven other people for the Alaska Native view of statehood project (for which I was bought out of two classes) - I have a total of 7 interviews now out of 10, many are not responding to my requests because they don't know me, I don't have travel funds to get to Alaska to do this project and I don't speak the language; I have been supervising two students on two of my projects (the interactive King Island map and the Alaska Native Corporation stuff). I have been collaborating with colleagues on environmental humanities initiatives. I have been collaborating and communicating with my colleage from PSU who is now at Oxford on the Alaska Native corporation stuff. I have been working with the seabird specialist, to finalize some aspects of the interactive map. I have asked my mom to write biographies and find pictures of community participants. I've been dealing with my budgets on my two active grants. I have been reading an analyzing breast cancer blogs for the CLA research grant that I have.
I have also had 13 appointments in 59 days, which averages about 1 appointment every 4.5 days; if you count recovering from treatments, that goes up to 19 days, meaning that 1 out of 3 days, I'm either going to an appointment or dealing with side effects.
I am asking for some special treatment, but I think that it's warranted, don't you? I mean, metastatic breast cancer is a lot to handle, right?
Anyway, sorry to write such a pissy post. But I think I can be honest in my own blog, eh?
Regadless of how I feel, I hope you all were able to enjoy the dry, if cool, breezy weather! Thanks for reading.
Sunday, March 7, 2010
This past week-end has been both busy and relaxing.
I had three meetings on Friday, so I didn't get much work done at work. Eddie's school had an auction on Friday - complete with a free meal - so that was fun. Eddie and his classmates were in one of the classrooms playing games. He enjoyed that. My volleyball buddies met for a beer, so I joined them and got home by 11pm.
Then on Saturday, I took him to his dad's, and then ran errands; I took my parents out to lunch and we sat out on the patio in the sun - yay Vitamin D! I decided that I wanted to work on another mosaic - so I found some more tiles. I even made dinner last night - I won't say I cooked it, just that i warmed things up. Then I relaxed - I felt tired all day, I think I was recovering from all the activity on Friday.
Today, I drove up to Portland and met an old high school buddy for brunch - we hadn't seen each other in something like 28 years! She was the still nice, friendly, energetic person I remembered! (Thank you for brunch, S!) Then, Scott (former boyfriend, now friend) and I hung out in the Hawthorne District in Portland. The fun thing is that we stumbled on their annual "Art Walk" - maps to various houses in the neighborhood owned by artists showing their work. We went to four houses and then visited at the Bagdad for awhile. Then, home to pick up Eddie.
Mom fixed dinner - a chicken stirfry. Watched Oscars. Now watching NCIS (recorded) and will go to bed soon. I have my next Herceptin treatment tomorrow . . . see you on the other side!
Thursday, March 4, 2010
Last night, I had a wonderful night's sleep. I was exhausted all day yesterday because I didn't sleep well the night before - I woke up every two hours and had to get up early. Last night, though, after doing some meditation, some green tea, and some Chinese herbs, I slept from midnight until 6:50am. Yep, almost seven hours without waking up. That's a record for me in the past few years. A few months ago, I was lucky if I got three hours before waking up and in the last month or two, I've been able to get 4 or 5 hours at a stretch. So, last night when I got seven hours - heaven!
But I woke up to this strange dream. I was on vacation - somewhere warm - when some kind of disaster (I don't remember what?) and all of us in this one area were evacuated to a building - like a school or something.
Then, I had to use the bathroom, so I walked into a large bathroom with several stalls. People were hanging around - like they chose the bathroom to camp out. Finally, one stall opened up - it was the handicapped one - so I went in there. What did I find? TWO families (two sets of parents and kids) camping in that one stall. The toilet, however, was free and they told me I was more than welcome to use it - in front of them. However, I said that I needed to take care of something first and I asked them, "do you have a breast pump? I'm a wet nurse and need to pump the milk out." (Don't ask me where THAT came from!! Weird!!) And, even weird, the dads,who were sitting next to each other, said, "well, yes we do. Here you go." So, they proceeded to plug it in and I disrobed and started pumping.
And, that's when I woke up. I woke up thinking that I still need to use the bathroom.
So, what does one make of that dream? My thought was that in my meditation practice last night, I imagined myself letting go of sadness and disappointment (particularly the decrease in physical activity) as well as the slight pain I have from the swollen lymph nodes. I kinda thought that maybe I was trying to say goodbye to my boobs since my meditation was about letting go. My friend thought that the whole thing about the breast pump had to do with me being a nurturer.
Who knows? Weird.
Wednesday, March 3, 2010
I've been watching American Idol the past couple of nights. I started watching it last year and got hooked. Adam Lambert and Allison Iraheta were my favorites.
This year, for the men, I liked Michael, Lee, Aaron (the young kid), and Casey. Michael just looks like he's a lot of fun, I like Lee's gravelly voice and this week's choice of song, Aaron has a great voice and just seems to be a genuinely nice kid, and Casey is his own person - and his guitar playing was cool.
Tonight, I like Crystal, Lily, Katelyn, and Siobhan. They're all quirky in their own ways - I love the qualities of their voices. Michelle was okay, too.
It's fun to watch ...and a way to relax in the evenings.
Tuesday, March 2, 2010
A week or two ago, I was feeling a little sad about the limitations I have been experiencing with regard to playing volleyball and/or doing other activities in the evening. I was mad that I'm having to give up something I enjoy. I resented cancer for taking that away.
I'm trying to let go of that disappointment and sadness. It's sorta like regret for a past action - it's comparing myself now to what myself was a couple of years ago.
A lot of what I'm reading these days, like Deepak Chopra's "Reinventing the Body, Resurrecting the Soul", Thich Naht Nanh's "The Miracle of Mindfulness", Ernest Holmes's "This Thing Called You", Elizabeth Gilbert's "Eat, Pray, Love", and Cheryl Richardson's "The Unmistakable Touch of Grace", advise people to learn to live in the moment, to be aware of what you're doing, to be present, etc. Also, in the book "Anticancer" by David Servan-Schreiber, the author states that cancer thrives in an inflammatory "terrain" (that is, your body). He advocates a variety of activities that are designed to counteract the inflammation that cancer likes, which include diet, physical activity, a healthy emotional state, and a peaceful, serene environment.
So, with that in mind, I'm letting go of the disappointment - that emotion doesn't need to stay in my body to increase the inflammation. I decided this morning that I needed to focus instead on the positive and on what really matters, my priorities. At this particular moment, my focus is on my health, my family, and my work.
I'm excited about the things that I'm reading about health and spirituality. I'm trying to incorporate some if not most of the strategies discussed in the books. It's interesting reading and it makes me think about a lot of things. It's not only interesting for my health but also from an anthropological perspective. I can probably use some of what I'm learning for work-related research. The book Anticancer seems to corroborate what the UW immunotherapy trial is trying to do.
I'm also excited about my family: I've enjoyed having my folks and my brother in the house. I never particularly liked living alone and now that they are here and we've adjusted to the new living situation, it's nice. Dad has been doing work on the yard; mom and dad have been cooking (yay!); my brother's around to help with computer stuff and we watch NCIS together. So, projects are underway here - and I finally finally finished grouting my mosaic and I put sealant on it tonight. It may soon be in my yard on the pedestal! Now, on to the next art project: I found out the other day that the Alaska Native Tribal Health Consortium is coordinating a beadwork quilt in which cancer survivors bead squares as part of the design. I think I may work on that. Eddie is also doing well in school; he enjoys having my family around. My parents' dog is sleeping with him, too. He likes that.
And, I finally got my head into work. There's a lot of things going on with my department (mostly good), and several of my projects are moving forward. I still have to work on two particular projects which enabled me to have this term off. But there's been good news - I have a fellowship for next winter that buys me out of two classes - I will use the time to work on a book. I'm excited about my research projects . . . now I just need time to work on them!
In the end, it's a matter of using my energy to heal and to enjoy life. I still enjoy life if I don't play volleyball. Volleyball isn't the only thing enjoyable about life. So, focus on what I can do and what I enjoy and what I'm excited about. It's all good.