I saw the wound care nurse this morning and she confirmed that Mount Herminator had indeed changed significantly since Tuesday. I asked her about the smell, but she felt there it wasn't cancerous and it didn't seem like a bacterial infection.
Then Eddie had two appointments and then I saw Dr. K's colleague, Dr. O., who is new to the practice. First, I should say that I like this guy, too, and felt very comfortable with him.
Dr. O took a look at the wound, smelled the smell that I have smelt since I got the fever. His diagnosis? An anaerobic infection. So, I will take Flagil in addition to Levaquin in order to get rid of the infection.
Now, my day was busy and I was running on about 1.5 hours sleep. Damn insomnia! I forgot to take Tylenol/Ibuprofen on schedule, so by the time I saw Dr. O, my temp was 99.8 (using the forehead thermometer which runs about 1.0 below the in mouth models). And my pulse, blood pressure, and heart rate were up. So he felt that my immune system probably couldn't handle Abraxane tomorrow.
Instead, he wants me to see Dr. F, the surgeon, so he could ultrasound the lesion to see if there are pockets of pus, which would not be good in terms of fighting the infection. If so, then I think they could take out the pus through fine needle aspiration? Anywa, a lovely thought, that, "pockets of pus".
However, he wants me to start Abraxane on Tues, which would be one full week after starting Levaquin and five days after starting Flagil. I will start it after I see the wound care nurse, my counselor, and my acupuncturist.
I teach on Mon and Wed so I might need to find someone to take over my class on Wed. I have already asked someone . . .
So, now I am back on schedule with all my meds. I started out feeling okay today and slowly deteriorated. Still have a bit of a fever. And exhausted. So off to bed for me in a few minutes.
Thursday, September 30, 2010
I saw the wound care nurse this morning and she confirmed that Mount Herminator had indeed changed significantly since Tuesday. I asked her about the smell, but she felt there it wasn't cancerous and it didn't seem like a bacterial infection.
Wednesday, September 29, 2010
I changed my wound dressing tonight and, boy, today, it weeper more fluid than ever. In addition, as I mentioned in an earlier post tonight, there appeared to be a cone-shaped mass starting to grow out of the main lesion. Tonight, that cone-shaped mass has grown even taller.
Is my body trying to physically expel this tumor?
This is a good thing, right?
But I have visions of changing my dressing tomorrow . . . And seeing this disgusting tumor come out when I take off the dressing. That's just gross.
Cancer is not pretty.
If it has grown even more tomorrow, I will call my docs office.
Just plain weird.
In the meantime, I am feeling better. The Levaquin didn't make me queasy this evening -partly due to acupuncture today which helped my stomach. But also probably due to some Chinese herbs that are useful for flu-like symptoms, strengthening my body's immunity, and the herbs are said to expel the foreign bugs from your body.
Maybe that is why Mount Herminator is growing. My body is expelling the cancer!
There have been a couple of times when I considered whether or not I should post a picture of my armpit, but it isn't very pretty. I can assure you, it is an image I want to forget. Part of feeling sorry for myself yesterday is that we took picture of the area to give to Dr. K and the image was just too much on top of the fever. Not not pretty.
But there seems to be some changes in the wound. It had shrunk some and now it seems that part of it is growing "taller", so to speak. It isn't getting wider or longer. But taller. It is growing out on an interesting cone-shaped way.
So I named it Mount Herminator! May it (figuratively not literally you understand) blow it's top and get rid of all that hot, toxic cancer.
Can you tell? I am feeling better. My sense of humor is back. I am a bit queasy and weak in the knees from the Levaquin that Dr. K prescribed, but that seems a small price to pay. I would rather feel like this than achey and tired from a fever; I feel healthier and more energetic with the antibiotic. But since I still have a headache and feel a bit chilly, I am taking it easy. No need to overdo it. Had a meeting this am -didn't want to cancel as we were talking about ways to accommodate my job around my treatments and fatigue. But someone is showing a film in my class for me. What a way to start a term!
Found this through a post on Facebook . . . Interesting!
Tuesday, September 28, 2010
I saw the wound care nurse today and she felt that my wound is not infected. And Dr. K didn't see any signs either, but he gave me a prescription for Levaquin, in order to get rid of any infection I might have - some bug that I may have picked up this last weekend. I took the first dose this afternoon, on an empty stomach and it's made me a little queasy. Now that I have eaten some, I am feeling better. But I got off my schedule a bit with the Ibuprofen and Tylenol, so I have had chills and a headache again. I think I am getting back into it again and I am feeling better.
However, I didn't sleep well last night -aches and chills, then too hot and sweaty- so I have been tired and that coupled with the ongoing fever and chills, I find myself really weepy. I don't feel strong today at all. And I don't like feeling that way.
I asked Dr. K about the port issue and he explained how both the chest one and the arm one work. He did say that it might be better to get the arm one because of the scar tissue and the swollen areas under my collar bone. However, he doesn't want to put in a port at this time because of the fear of infection. If the armpit wound gets infected, it would cause the port to be infected, too, and it would have to come out. So until the wound heals, no port. For as long as my veins can handle it.
As for Abraxane, I will be on it for at least two months and then we will reevaluate. If it works, then I will go on it for another four
months. That gets me within the timeframe for when the Herminator-2 cells should be working well, so with any luck, I could go off Abraxane then.
Then the CT scan results. The bad news is that in addition to the main lesion and satellite lesions in my armpit (the main one being about the same size), the radiologist felt that there is now a lesion on my liver (although Dr. K didn't seem to be completely sold on that idea), there are spots above my right collar bone (which I knew about), in the upper center of my chest (where there was some extra tissue after reconstruction -it seemed bigger and more tender), some suspicious pictures in my right groin and also some growth on a vertebrae in my spine. The good news is that the largest lesion in my left lung only grew 0.1 cm since mid-July. So the biggest problem areas from July appear to be about the same size, which I hope means that the t-cells were doing their job in those areas. Maybe, just maybe, this means that the lesions that were there at the time of the t-cell infusions have stabilized (meaning that it is working) but new spots that have cropped up in the last couple of months (remember no Herceptin or Zometa since late July) are not yet affected by the Herminator-2 cells, that my body's immune system is not yet primed enough to work on these new spots.
So, yep, it's time for Abraxane. I will also get Zometa again.
I have been trying hard not to feel too sorry for myself. I don't like feeling helpless. But hard to do when I am also fighting an infection.
However, I already feel less weepy now that I have had the Levaquin. Can it be working that well already? And I am back on track with the Ibuprofen.
P.S. My temp is now 97.9, about three hours after I first posted this entry.
Monday, September 27, 2010
is still the same. Since I did a play on Shakespeare "To Port or Not to Port", I thought I would continue the theme!
Since last night, I have had a slight fever. It ranged from 99.5 to 100.6 last night. So I have been taking Tylenol and a half dose of Ibuprofen. Also, my neck and shoulders are achey -my arms have been achey, too, and last week, on one of the days, Imhad a headache all day. The headache is back today. My temp about 15 min ago was 100.3.
In other words, I am having flu-like symptoms.
But, is it because I have picked up some garden variety flu bug? Or, could it mean that the vaccine I had 11 days ago is kicking in and my body is now producing a lot more Herminator-2 cells and they are out fighting the cancer? Or do I have an infection in my open wound - home of Mr. Exu Date?
I see the wound care nurse tomorrow morning and then about lunchtime, I see my oncologist, Dr. K. I will ask their opinion about whether my wound is infected.
Dr. D. from UW said that when the Herminator-2 cells are activated, I will have flu-like symptoms, which is why I got a fever and chills and achiness after the Herminator-2 infusions and after vaccines. Dr. D. says that thw chills, fever, and achiness are due, NOT to the virus or bacteria causing the illness, but rather to the t-cells that are "cytotoxic", meaning that they are killing the invader cells, like a flu or bacteria bug. That death of the invader cells causes the flu-like symptoms. So, here's hoping that the vaccine has unleashed a new assault on those satellite lesions . . . And other cancer cells throughout my body.
So, I need to rest. Should be easier tomorrow as I don't teach. Today was the first class for Circumpolar Peoples and Climate Change. It went well, I think. But it took a lot of energy. Hanging out in my room watching reruns and resting. Lots of liquids. Still have an appetite. May need more Ibuprofen.
Saturday, September 25, 2010
Some of my indigenous friends might consider the phrase "indigenous anthropology" to be an oxymoron. Indigenous peoples have been the subject of anthropological research for so long that anthropology is seen (and if truth be told, it is) a colonial enterprise. And colonialism has not been kind to indigenous peoples all over the world, so there has been a backlash against anthropology by indigenous peoples.
However, there are some indigenous peoples that are using anthropological methods to benefit their communities. Some, like me, grew up outside our communities, so anthropological methods have become a way to understand more about our cultures and to connect with our communities and reclaim our identities. That's how it is for me. My work is intensely personal.
In recent weeks, I have been asked to audio-record myself reading a chapter I wrote on teasing cousin songs among the King Island Inupiat Eskimo and to be interviewed by a documentary filmmaker researching Kotzebue's "Lost Dances", including the Wolf Dance.
These have been interesting exercises because I ended up revisiting my master's degree research from 17-19 years ago and my Ph.D. Research from 11-13 years ago. (gosh, has it really been that long ago? I don't feel that old!) As I tell my grad students, choose a subject that you are passionate about because you have to live with it a long time.
I found out doing the audio recording and the filmin that I still really enjoy these topics so I think that means that I need to revisit them professionally. Fortunately, my book proposal was accepted at OSU Press, so this year, I will be rewriting articles on teasing cousin songs and on the Wolf Dance.
I recorded myself reading the article and pronouncing the teasing cousin songs. The recording was requested by professors at University of Alaska Anchorage who were using that article in a freshman composition class. I found out later that about 10 or 11 sections of this class were using it, which means that upwards of 200 students were listening to it. I thought maybe 15 or 20. That was a bit overwhelming. They wanted to post the recording on a public blog for the class but I declined; I do not know the language well, so I feel lie my elders should do the more public recording.
And today, I just finished a three hour interview with the filmmaker. It took a while to find a spot that was quiet and had good light, which in the end, was my office. Boy, it was intense, but in a good way. It meant focusing on my words, making sure my information was correct, paying attention to where I looked and making sure I didn't rustle and mess up the sound for the mic. It was intense because it brought up all these feelings about why I got into anthropology to begin with -which means I cried because my work is so tied to how I feel about who I am in relation to the King Island community and how strongly I feel about trying to document, save, and find scattered bits of information about our culture before it becomes "lost". I want our community to be proud of the accomplishments of our ancestors and of who we are today (playing on Facebook, staying in touch via the Internet, etc.). My dissertation research on the King Island Wolf Dance was really a process of pulling together hints of information that I found in archives, in ethnographic literature, in museums, in schoolteachers' diaries, in photographs, drawings, and film. Anthrology gave me the skills to find it; my passion for the information causes me to be observant of the many places I can find it; and my desire to help the community document our history and culture helped me to pull it all together to tell a fuller story than our communities might get otherwise.
All of that came rushing back because the filmmaker, Norman Jayo and community member, D'Anne Hamilton, are helping the youth in Kotzebue to do the same thing that I have done. It brought up many emotions about why I do what I do. So the session was emotionally intense today, but good.
I am tired.
I have been conflicted of late about being in academia, primarily because of the energy and time demands required of a professor. Cancer treatments do take away your energy. So I don't know if I can put the same amount of time into the job as my colleagues. I also want to be very strategic about what I do -your priorities shift with a life-threatening illness. I would rather hang out with my son or my family when I feel good rather than waste my precious time in some silly committee meeting that win't make a difference anyway. It really means making sure that I use my time doing things that have the most impact, both for me personally (my research) and for indigenous peoples generally. Undergraduate advising doesn't have the same impact as my spending several hours today with filmmakers talking about the Wolf Dance, because that film will help those kids who made the film. My audio recording for a composition class, introducing those students to how another culture composes something, has more impact.
So, I need to figure out ways to invest my time wisely at work. And what I want to do is outside the norm for most professors and people aren't quite sure how to make that work for me. But we are starting the conversation soon . . . And if all goes well, I won't be as conflicted about my job any longer.
So thank you, UAA English profs, and thank you, Norman and D'Anne, for reminding me of what is important to me and giving me the opportunity to make a difference!
Thursday, September 23, 2010
In recent weeks, two other people I know, both Arctic anthropologists, have died because of cancer. I worked with both individuals at some point.
Ernest "Tiger" Burch died on September 16, 2010. While the obituary didn't give a cause of death, they are saying that donations can go to the American Cancer Society. He also last emailed me last year asking how I was doing. He told me he was okay. He also old me to "stay tough". Tiger gave me a lot of encouragement, mostly when I was just starting out, with my dissertation research, and most recently giving me comments on an article I had submitted for publication.
The other sad loss to Arctic anthropology is Herbert Anungazuk . I knew that he had been fighting cancer for a few years as well. I did some fieldwork with him in Wales in 2003, I think. He always spoke so lyrically of the way of life of his ancestors.
I am supposed to start Abraxane on Oct. 1st. When the infusion nurses called to schedule, they were very concerned that I didn't have a port and strongly encouraged me to get one. Apparently, Abraxane is very hard on the veins and I have to do this treatment weekly (once a week for three weeks and then a week off).
But I don't want a port. (Aside: just had a funny thought. Remember the saying, "any port in the storm"? I started seeing images of ships and sailors. Because I am single now, maybe I should get a port!!)
"Port" is short for "portacath" and is essentially a catheter that is inserted under the skin that goes into a vein for easy infusions. Many cancer patients get these ports inserted into their chests. Some get a P.A.S. Port in their arms.
I don't want a port.
It's a visible reminder of being a patient. My strong reaction to not having a port reminds me of how strongly I wanted reconstruction. I don't want to *look* like a patient. Plus there are horror stories of patients getting infections from their ports and other complications. Then again, I know of a few patients whonare very happy with theirs.
It's just one more thing, you know.
Okay. No more whining.
The decision now is which one I should get. I really prefer the arm port. My chest area has been traumatized enough with three surgeries and radiation and it is tender. But because both axillary (I.e. armpit) regions are compromised (lymph nodes taken from the right side 8 years ago and cancer and a weeping wound on the left), I am not sure if I should have the arm port.
So I want to talk to someone about the pros and cons before making a decision. Anyone know more about this than I do?
Monday, September 20, 2010
I may have said something before, but I will be a model for a local fundraiser called Puttin' on the Pink. It is a benefit that raises money for Project H.E.R., for women have been diagnosed with breast cancer in our local community. They have mentors that help the newly diagnosed navigate cancer treatments, they gave me two free meals two? years ago, they offer Mammacare classes, and pay for the local breast cancer coordinator. They are a great resource for our community, so when this year's co-chair asked if I would model, I said sure.
Last week, I had my fitting at a local sporting goods store that sells high end sporty clothes and equipment. At first, I was disappointed that I wasn't wearing dressy clothes, but in the end, with my Exu Date dressing, I figured it would be better to wear something comfy and casual. The outfit we settled on has some khaki-colored (with a bit of an olive green tone) slacks ($99) made by Ex Officio that are really soft and comfortable (not cotton, but a synthetic material, I think), a fine-striped plaid shirt that has maroon/dark purple stripes and also a grayish-green ($65) with a shiny Reddish-purple North Face vest ($95), plus a purplish red leather pair of Keen shoes (like Mary Janes, about $90). It was fun trying on clothes! And they looked good on and I felt comfortable. I went across the street and found some garnet earrings and necklace - I just decided to buy them. The store gave me a 10% discount. The sporting good store also offered me a discount of the clothes (30%) and I must say I am tempted to buy the Keens, the vest and/or the slacks. But I should save my money.
My sister agreed to be my escort so today, she and I found her dress. I also need to find one for the pre-show cocktail hour and silent auction. I might already have one that works, but I may look just in case!
Anyway, at first I felt a bit intimidated by the formalness of the affair, but now I have decided just to enjoy myself and have fun dressing up! Luckily, I should still have all my hair. I will see my hair stylist earlier that day to hopefully get an edgy, spiked, sort of hair style! I will post pictures!
Sunday, September 19, 2010
Satellite lesions in a cancer other than melanoma that has been treated with adoptive t-cell therapy.
In other words, a phenomena that medical professionals thought was unique to melanoma is now happening, right now, in my body!
I always thought I was *special*! LOL
I had my visit at UW on Thursday and talked to Dr. D. Boy, is she smart and very very up on the medical literature. She was quoting immunological studies, cancer studies, t-cell therapy studies.
I followed along, but lord knows I won't be able to remember it all, let alone report on it.
Instead, I will tell you what I remember, but please remember that I may have details wrong. So don't quote me. Talk to a medical professional if you have questions!
First, the satellite lesions. As I may have discussed in an earlier post, it seems that the main lump or lesions has shrunk. That is the one that is leaking exudate and where there has been some breakthrough (an area about 4cm long and a 1 cm wide) in the skin. This was the first time that Dr. D saw me, but she felt it was smaller, too, based upon the digital pictures we sent as well as Dr. K's description.
And then she said, "Deanna, your case is very interesting." (Aside: be wary when a doctor says your case is interesting. Could be good. Could be bad. But usually means something is out of the ordinary.)
Turns out that the medical literature reports an "interesting" phenomena that happens in melanoma patients with advanced melanoma who get adoptive t-cell therapy. What happens is that the main central lesion shrinks but these satellite lesions crop up that tend to be more resistant to t-cell therapy. Medical researchers thought that this phenomena was unique to melanoma but now I have shown that this isn't the case.
My case is the first documented case in which satellite lesions have cropped up in a cancer that is not melanoma. Should one cheer at this news? Hmmm, not sure . . .
Anyway, Dr. D feels that these satellite lesions will not respond to the t-cell therapy as well. I also have some lumps in my right clavicle that have grown a bit in the last month (from over 1cm to 2 cm and the other is now about 1cm). Dr. D says that these are cancer, so in her opinion, I need to start systemic therapy sooner rather than later.
I could do radiation, but that just treats the local area (under the armpit), not the whole body. Since there is evidence that cancer is elsewhere in my body, systemic therapy would be better. If systemic therapy doesn't quite do the trick in my armpit, we can always do radiation.
I should also say that radiation would hurt the skin's ability to heal. Dr. D thought that once the cancer in the armpit was killed through systemic (i.e. Chemotherapy) treatment, the tissue could heal within about six weeks.
Radiation would delay the healing and might also impair the healing process.
So the drug of choice is Abraxane. Side effects include hair loss (about 50%), neuropathy (numbness and tingling in the extremities), fatigue, and maybe nausea. I wasn't so sure about this chemo unil Dr. D explained that Abraxane works a little more like a targeted therapy rather than a traditional chemotherapy. There is something about how the drug is created, at the molecular level, that causes it to pause or stop where the cancer cells are. Then it releases a chemical signature that mobilizes the t-cells to attack the cancer. (I will probably butcher this explanation, so don't quote me!) Abraxane finds the cancer cells, coats them with a chemical that makes the cells look like a bacteria. This is important because while the body's immune system sees the cancer as abnormal (a mutated version of your own cell), it doesn't see cancer cells as foreign bodies. So the antigen presenting cells (cells that roam around your body looking for foreign cells like viruses and bacteria) don't send out a signal to the t-cells (that Dr. D described as hanging out drinking coffee in your lymph nodes waiting to for the alarm to seek and destroy - loved that image, BTW, makes me chuckle) that there is a foreign body. Abraxane changes that by giving the cancer cells the look of a foreigner, so the antigen presenting cells start sending out the alarm, calling for the t-cells to attack the "foreign" cancer.
So, I will start Abraxane in two weeks. I will have a CT scan next week. I wanted to wait two weeks because Puttin' on the Pink is in four weeks and I want to have as much of my hair as possible. The hair doesn't start falling out until 2-3 weeks afterwards. I don't mind the hair loss. Fatigue is fatigue. Have experienced that before. It is the nausea that I don't like. And the neuropathy will be weird.
I hope that I only have to do this for a few months. It will depend on how my body responds. I think it will help get us back in control of the cancer and then when the t-cell therapy kicks in, I won't need anything too strong. (Dr. D reiterated that the average time for complete response to t-cell therapy in leukemia is 45 weeks or 10 months.)
So, Abraxane on October 1st. My visualization while getting it will be the construction of a red flashing light and a siren at the site of cancer cells, so that it can sound the alarm to those coffee drinking t-cells ha Ginger out in my lymph nodes. Time to sound the alarm!
Wednesday, September 15, 2010
My friend Heather's video (produced by her friends, Tony and Camille, entitled Mammogram (I posted the link a couple of days ago) now has over 8500 views on YouTube. She was featured on KOIN TV news today and will be on AM Northwest tomorrow and Studio 6 at 4pm! Woo hoo! Great job, guys! I am so thrilled for you!
I may not post for a couple of days. I will be in Seattle tomorrow for a follow-up visit at UW. I will see what they have tomsay about the tissue necrosis and whether or not I should start some kind of treatment. At this point, Imwould lime tomhave their best guess about what will heal the necrosis and kill the cancer sooner because that is the treatment I will choose.
Then on Saturday, I head to Newport to attend a gathering with members of our new School of Language, Cultures and Society. My department will be combined with Ethnic Studies, Women's Studies, and Foreign Languages and Literatures, supposedly to save money, but so far, I think they are showing that any savings will be small - maybe even cost more if you consider all the time and effort all of our faculty have put into talking about what to do, time that took us away from our duties of teaching and research. At least, I like our colleagues and it will be nice at the Coast. I will stay the night there - a friend will stay with me so we can play at the coast on Saturday. Eddie will be with his dad.
Monday, September 13, 2010
Cancer took another one from us last Friday. I started reading Chris's blog about a year ago, I think. She will be missed . . .
Christine Lynds, The Edge of Light
Heather, yours and your friends' Mammogram video will hopefully help!
My friend, Heather Kenagy, is performing this parody of Lady Gaga's song, Pokerface. It's great! Her friends have a team raising money for Komen for the Cure next week. Heather composed the parody My Xeloda for me. That's an awesome performance, too!
Mammogram, starring Heather Kenagy
Happy Monday everyone!
Friday, September 10, 2010
First, I want to say that I am not writing this post to garner more sympathy, but more to share with others some strategies for and perspectives about Aspergers with the hope of increasing understanding.
Some of my loyal readers may not know this, but my son has been diagnosed with Aspergers's Syndrome. He is "high-functioning", as they say. He is able to function fairly well in normal society and only has a few outward quirks, like not directly meeting a stranger's gaze and sometimes flapping his arms.
From what I understand, Aspies (as they are sometimes called, they may even call themselves this), have brains that are wired differently than ours. There are not a lot of cross-brain connections (i.e., left to right) as there are in "normal" (BTW, I am really beginning to hate that term "normal", because who gets to decide what that is?) brains. Instead, there are more than the normal number of local connections between neurons. This explains, in part, why Aspies and autistic people have a lot of sensory sensitivity, instead of firing just a few neurons, a stimulated neuron might fire hundreds of them. Some people who are "on the spectrum" (this term emphasizes that not all autistics or Aspies are a like or manifest the same symptoms - there is a range of effects) can actually see the blinking of fluorescent lights; others are very sensitive to sound or touch. Eddie is sensitive to sound (and he may even have perfect pitch) and when he was younger, was sensitive to touch. He didn't like a washcloth on his feet, for instance, or q-tips in his ear. Until Eddie gets used to your facial mannerisms, it is too distracting for him to look you in the eye - your eye and facial movements are too random and unpredictable. He is used to me, so he always looks me in the eye. That is why they might like to watch the same video over and over again (I used to watch a lot of Elmo with him!) and also why playing or working on the computer is preferred -the computer is predictable especially since they can control it's movements.
In addition, most people on the autism spectrum have to work very hard at social interaction - the rules for what to do when they talk to someone that are usually very easy for the "normal" ("neurotypical" is a better term) person are rules that they need to learn explicitly. The neurotypical pick up these rules more or less unconsciously; they often do not think about them. The neurotypical grows up and learns by observing and imitating. But people on the spectrum have to learn these interactions explicitly and they have to consciously remember all the myriad rules that go with each interaction. So, my son knows what the rules are for interacting with me, but the rules are different for his teachers and even each teacher is different, so he has to relearn them consciously every year.
Autism and Aspergers Syndrome were terms coined at the same time, by two different psychiatrists in the 1940s. One was working in the States and the other in Europe (I think). The one who coined Aspergers mentioned that these individuals also tend to be "clumsy". I think this has to do with how their brains are wired. It affects both their muscle tone but also their eye-hand coordination. Eddie has below normal motor skills and especially fine motor skills. (This is complicated by the fact that Eddie has also been diagnosed with Marfans Syndrome, but that is a subject for another post. For my purposes, suffice it to say that his muscles and ligaments are too stretched, not elastic, so his muscles will never be strong.) Eddie doesn't like art or handwriting or doing things that require precise movements of his fingers.
People on the spectrum also do not like changes in routine. It gives them a lot of anxiety because they don't know what will happen. It is not predictable because it is unknown. It also means learning a whole new set of rules. Once they do, their anxiety lessens. When he was younger, I used "social stories" and PECS (pictures that show daily activities) to help him learn routines and to transition to new ones. Now I can do it verbally. It helps him lessen his anxiety.
I guess I am writing this because Eddie just started school this week. His first two days were fine, but today, his anxiety got the better of him. He was afraid there would be a fire drill and he thought he forgot his book, so he thought that he was breaking a rule and would get into trouble. He complained of a headache after lunch but he couldn't really articulate why he got it or what was causing his anxiety. It is hard for him to connect his feelings to words and he gets flustered when I ask too many questions. I need to learn more about this, though, in order to understand it better. Today, Eddie wanted to come home, but when I gave him the option of doing his homework in my office while I worked, he decided to stay in school. Fortunately, it was time for afternoon recess by then, so he went out to the swing (spinning and swinging are what they call self-stimulating behaviors; it seems to calm them when they are over-stimulated. It is like the local connections are too much for them; when their vestibular systems are stimulated through swinging or spinning, I think it calms those local connections down.) after recess, he seemed calmer.
At any rate, there was a time when I took him to occupational and therapy sessions -quite a bit through first and second grade. But it was hard work for both Eddie and me because I had to keep him on track. I came to realize that Eddie works so hard at school, trying to remember all the rules for social interaction, that therapy was like the straw that broke the camel's back. I also suffered from adrenal fatigue (caused by using a memory foam mattress) and then was diagnosed with cancer again, so I haven't pushed it for over two and a half years. So when he is home, I let Eddie have unstructured time, so he can relax and not have to remember all the rules.
I also do not try to have him behave in "normal" ways. I let him be a "weirdo". By this, I mean me and my family accept him as he is, letting him flap his arms, accept if he spills water, play on the computer or his wii and not dictate to him how to act. I think Eddie is comfortable at my house because he understands that he is not like his classmates. My family (my folks and younger brother live with me) is outside the norm. My mom is full Inupiaq Eskimo; my dad/parent is transgendered; and my brother may also be on the autism spectrum. Then, his mom (me) is also Inupiaq Eskimo and I have breast cancer with lots of medical appointments. We also like to be silly;we tease Eddie and make funny rhymes, use funny voices, etc., so he is comfortable being who he is at our house. We are weird and proud of it! We accept the diversity of our experiences and don't try to have Eddie fit into somebody else's idea of "normal". And we let him relax. He seems happier for it.
I also try to use Eddie's interests to encourage him in certain activities. At the moment, Eddie loves the TV show, Wipeout. So we built him a mini-obstacle course in the backyard and he spent more time outside in the backyard exercising in order to beat his own score.
Anyway, there is probably more, but for now, I just wanted to try to explain more about autism. Since Eddie has been anxious about school today, I am letting him relax and not micro-manage his life at home I am in close conversation with his teachers at his school about how we can decrease his anxiety, like maybe less assignments using handwriting or art or other fine motor skills, easing him into the new rules for school, or maybe allow him to go outside and swing for a few minutes to calm down. We will see how it goes.
Thursday, September 9, 2010
Wednesday, September 8, 2010
Mr. Exu is really crying buckets. I went through 10 or 12 layers of gauze sponges in about 8 hours today. It was almost an inch thick. My colleague joked yesterday that I should just wear a Kotex under my arm!
The interesting thing is that last week, my acupuncturist started treating me according to a specified treatment given to her by her teacher. It is aimed at releasing old patterns and stagnant energy. The treatment is augmented by the use of essential oils that are dabbed along the Dai Mai (belt channel). I started using the essential oils (3 days on, 3 days off) after I saw her on Tuesday last week and by Friday, Mr. Exu was weeping more. I am on Day 3 the second time again and that armpit is practically gushing.
A coincidence? Is the treatment working to release old patterns, exemplified in weeping fluid from my largest area of worry in that armpit? I think so.
I see my acupuncturist tomorrow and will mention it to her.
In the meantime, I had gigong tonight and it really helped my mood. I was pissy at home all day because I didn't get enough sleep and had to get up early. My task tonight! Turn out the light by 11pm and GET SOME SLEEP!
P.S. Also found out that since our department's office managers duties have shifted because of the "realignment" at the university, she has less time for advising. So this year, I will be our undergraduate advisor, which gets me out of one course for the year. So at this point, I teach one course in fall and one in spring, pus a one-credit Honors College overload. I gave a Humanities fellowship in winter and advising buys me out of another class. Whew. More flexible time for me which is needed.
Tuesday, September 7, 2010
There is something bittersweet about the start of the school year. Eddie starts tomorrow; fortunately for me, I don't officially start until Sept. 27.
A lot of my friends love fall time. I don't particularly like it. I see fall as a time when we lose all the beautiful blue skies and sunshine. I also lose the freedom of time. Summer has this unscheduled, do-as-I-want feel to it. When fall starts, I have to abide by other people's schedules. My time is not my own.
On the other hand, I reminded myself that of all the jobs in the world, I do happen to have one of the most flexible in terms of time. I just need to teach as scheduled and attend necessary meetings. But other than that, my time is my own as long as I can prove that I have been productive with regard to research and serve on committees. So I really can't complain too much.
I can, however, complain about getting up at 6:45 am!
Monday, September 6, 2010
As I mentioned in my earlier post today, while I am disappointed that I couldn't see my friends and colleagues in Norway, I am glad that I am home as I adjust to my weepy date, Exu.
With regard to aches and pains, I start feeling them when I forget to take Tylenol. For some reason, I ache from my lower neck, to my shoulders and shoulder joints, down both triceps to my elbows through my forearms to my finger joints.
I took Eddie to Chuck E. Cheese for a last blast of fun before school starts on Wednesday. By the time we left, my shoulders and arms were aching so bad all I could think of was getting home, but I still had to drive 45 min to get home. It has a way of dampening your mood, causing worry, etc. But soon after I got home, took some Tylenol, and put heat on all the achey places, I feel almost normal again.
I am not sure what is causing all of the aches. I do know that the cancer and inflammation in my left armpit is causing aches in that shoulder joint and I know that scar tissue and some lymphedema is causing aches in the right one, but I am not sure why my elbows ache (maybe just resting my arms on surfaces?) and I do have arthritis in my finger joints. Maybe tension is causing the neck aches - well, that and having to sleep on my back too much.
Anyway, as I watched people at Chuck E. Cheese and at the mall, I envied them the fact that most probably do not feel any pain.
They are so fortunate.
Sigh. I will experience that again. Not sure when. Just hopefully sooner rather than later.
So, I presume ya'all read about my latest beau, Exu Date? I posted a link to my blog entry on Exu on Facebook and one of my friends observed, "Boy, it sounds like your date is a weepy fellow!" I replied, "Yes, I kinda pictured myself with more of a 'manly man' to date!"
But geez, that guy is really crying now! He's making a mess of my clothes! I can hardly keep enough "kleenex" around. The wound care nurse even gave me some "Kleenex" that we hoped would last two days and it lasted only a day and a half. Then, of the other dressings she gave me, I totally ruined the clear plastic ones that would cover the dressings and make them waterproof. It folded in on itself (sorta hard to put a dressing on in your armpit, which makes one hand more or less useless - guess you need to be double-jointed, too, with this disease!) and I had to throw it away.
Imagine this: a person standing over their bathroom sink, trying to keep the dressings sterile, with one arm raised, trying to hold a dressing in place with that same hand (c'mon, try to hold a dressing under your left armpit using your left hand! Oh, wait! Just had an idea, how about having a special Olympics category labeled one-arm dressing changes? It is a form of acrobatics and gymnastics rolled into one!), and using the other hand to place another dressing (about 4 inches x 4 inches) in the right place, making sure not to cause the adhesive to stick to itself or to anything else) over a third boob that has a totally uneven surface, with a nice fold underneath that makes it hard to put tape over.
So now I don't have a waterproof dressing and I don't have the clear thin plastic dressing to cover the area to keep it from leaking. At least, until tomorrow when I see the wound care nurse again. And that damn Exu is crying! I am back to changing the dressing two or even three times a day, he is soaking through the dressings so fast.
I woke up with wet under my arm at about 5:30am, so rather than change the thing (which takes about 30 min), I stuck a washcloth under my armpit to make it through rest of the night. It's not a pretty sight. I am already feeling mighty tired of this situation. It was bringing me down, mood-wise, but now that I have tried to paint a comical picture of my Exu-Olympics, I started grinning.
Besides, I kinda like the image of Exu crying. Exu is the cancer, after all, so he's crying because he's losing the fight under my armpit. Go go go Herminator-2 cells!
P.S. I was supposed to be in Norway now, attending the International Conference on Indigenous Place Names in Guovdageaidnu. I am disappointed that I didn't get to see my friends,but on the other hand,I couldn't imagine traveling with these dressings and having to change them frequently or having to contend with leaky dressings or running out of supplies or clean clothes, etc. Best to be at home in case the worst happens!
Saturday, September 4, 2010
The last two days, my family and I had a garage sale. My folks had some china from my dad's sister that they wanted to sell, so we sorta pulled together a lot of other things to sell. Eddie even got together games, books, aptoys, and plushes he didn't want. In the end, we all sold some things -Eddie sold enough to purchase a desired Wii game, my brother got enough to buy more memory for his Android tablet, my folks and I got enough to buy dinner last night and tonight, enough to pay for the newspaper ad, with some left over for groceries. We took a bunch of stuff that didn't sell to Good Will.
So, it was worth it. We cleaned out the garage and got some money for it. I was really tired yesterday and the day before. I never had a chance to really recover from going to the State Fair on Wed, then was busy on Thurs cleaning and organizing, then did the garage sale and bought Eddie's school supplies, emergency kit items plus some things for the classroom.
Today, I cleaned and organized some of my papers, need to file some tomorrow. I also need to do some edits on a chapter tomorrow. Then, head to my friends' house for a "Whose Line Is It Anyway" party! I think some light-hearted comedy is just what the doctor ordered! Then on Monday, I will take Eddie to Chuck E. Cheese, which was a ritual we had for when school ended, but we didn't get to it yet this year. Tooo busy!
Happy Labor Day!
Thursday, September 2, 2010
Okay, after consults with two doctors and my acupuncturist, I have made a treatment decision:
I am not going to do anything for the next two weeks at least.
Yep, do nothing. Let those Herminator-2 cells do their thing, which is kill the cancer.
I saw a radiation oncologist on Tuesday. He saw the tissue necrosis, as well as the weeping and the nodules. When we look at what's going on, we see that the large tumor under my arm has not grown at all. In fact, the tissue around it has necrosis, so we assume that the cancer in the skin is dying. On the other hand, the nodules, which have cancer, seem to be bigger. Is that because the cancer is growing or is it growing because the Herminator-2 cells are in there and causing inflammation? At this point, only time will tell. In the end, he felt that maybe we should hang in there until I see the docs at UW on Sept 16. That way, I stay on the clinical trial, which is a good thing, in the name of furthering understanding of this process. He was fine with waiting two weeks. When I mentioned to him that cancer was on the run, he agreed with me. He also said something that there might be cancer in the fluid leaving the area, which is just what I said in an earlier blog post. So maybe the cancer is on the run.
Then, I saw my acupuncturist. She had just returned the week before from a weekend workshop with her mentor that focused on treating patients with cancer. So she gave me a long long list of dietary changes I can make. I may write it all down sometime, but no time tonight. Then, when she found out that I hadn't had any western medical drugs to treat my cancer, she was excited. She feels we have a good window here to see how Chinese medicine can work with the Herminator-2 cells to fight the cancer. I guess that her mentor uses a series of weekly treatments for cancer patients, so she started me on that treatment. I have appointments with her next week and the week after. So I started to gather food to support this change in diet. I must also not eat sugar or anything with added sugar, white flour, or alcohol. She was excited that I wasn't on any western medicine drugs.
I also saw the wound care nurse about the weeping under my arm, so she put on a waterproof dressing with silver on it to keep it free from infection. I don't have an open wound, per se, but seeping from the skin. The dressing can last two days, so I will see her tomorrow and get another change.
This morning, I saw my regular oncologist and while he couldn't see the armpit, he did see the picture ghat we took on Tuesday. While he is uncomfortable, he will allow me to wait another two weeks and then make a decision then. Maybe we will have a better idea of what's going on.
So, the plan, as I understand it, is to wait. Show Dr. D. the area and see what she says (on Sept 16). Then I will see Dr. K. in Newport, as that is where he will be before he goes on vacation for a week. I will also be in Newport for a work-related meeting.
At this point, I am happy to wait. I have visual proof that there is some death of the cancer there. And my acupuncturist was happy with some of my pulses - they were strong. And I have renewed my commitment to changing my diet and exploring my more spiritual side and changing old patterns.
I will say that I have had a personal challenge recently and I ended up falling into an old pattern. I thought I was justified in my reaction . . . and I think the situation does warrant some kind of response. But then a friend of mine emailed me out of the blue (although we have emailed a few months ago and exchanging strategies for fighting cancer) and he mentioned a concept from a book he has recommended to me and reminded me that we are all part of the energy of life. I read the part of the book he recommended and realized that the person I am angry with is also part of this flow of energy and life and my reaction . . . as well as my not-quite-formed ideas to resolve the situation were created blockages, like knots in the tapestry of life. And that was causing me more stress than I needed at the moment. My acupuncturist had asked whether or not I could let go of the situation and at the time, I was unwilling. But after the email and reading this book ("This Thing Called You" by Ernest Holmes), I realized that I was holding on too tight to my own ego. Once I realized that, I let go and I felt things/energy flowing through me more freely, which made me realize how tightly I was holding onto this issue.
Anyway, this gives me hope that between the Herminator-2 cells and acupuncture, I may soon (in a month or so) have some evidence of the retreat of this cancer. So, wait we will.
More tomorrow on our visit to the State Fair! And I need to post pics.