I may have mentioned a few months ago that I am attempting to date again. I have gone on only two dates (not surprising given that I am up front with my cancer status). And I have been fairly busy, so I am not trying really hard. But this weekend, I was introduced to my new "date".
His name is Exu Date!
Exudate? Who the heck is that?
Actually, the more appropriate question is: What the heck is that?
For those of you who don't know, it is a clear fluid that seeps or oozes from wounds.
In my case, I don't see an open wound per se, but the skin (where it is purplish-gray) in my left armpit has started to weep from the dying skin.
As I mentioned, the purplish-gray area is tissue necrosis, which means that the tissue is dying, which is a good thing since it means the cancer in the skin is dying.
However, I have no idea how long the tissue necrosis will last, or when things will start healing, or how radiation will affect it and if radiation will slow healing.
In other words, I have no idea yet how long I will live with this new Exu Date.
So I am back to changing dressings daily, this time in my left armpit.
I guess I will think of it as the long slow weeping death of cancer. Yeah, that's it. The cancer is finding out that it doesn't belong in my body any more, so it's slinking away. Or my body is kicking it out. You see, Exu Date isn't a very nice guy. So out it goes!
Man, ya gotta have some humor with this disease!
Monday, August 30, 2010
I may have mentioned a few months ago that I am attempting to date again. I have gone on only two dates (not surprising given that I am up front with my cancer status). And I have been fairly busy, so I am not trying really hard. But this weekend, I was introduced to my new "date".
Sunday, August 29, 2010
We returned home from the Oregon Coast yesterday. I wanted to stay there, but I was also looking forward to sleeping in my own bed! After packing up, we drove to Devil's PunchBowl to walk down to the beach there. Lots of surfers there. It was also warmer because it was more sheltered from the wind. Then, on south to Newport where we ate lunch before heading home.
We tried to get to the beach every day. I had a great time beach combing on Friday, found lots of beach treasures. We also got in some shopping at local stores, went to the arcade/casino, we went to Mo's, saw great sunsets, and listened to the surf.
My godparents showed up Friday night. At the time, we were having dinner at the Lighthouse Brew Pub, after spending time at Road's End Beach and then the arcade/casino. I ended up losing $30 (after winning $20 a few days before), for a net loss of a $10 contribution to the Confederated Tribes of Siletz Indians. Not too shabby, I think. I got to play a few hours for that.
My godparents live in Omak, Washington. We hadn't seen them in several years, so it was great to see them. They stayed with us at the house in Lincoln City and then at my house last night. Mom and I played double pinochle with them until 12:30am, so I spent most of today being tired. But it was fun! I hadn't played pinochle in years! I think I won more than I lost. Anyway, it was a good visit with P. And K. Thanks for visiting!
I would say that despite the fact that it was a funky house and we were on the bay, it was still a good time. Fun to get away for a few days. I also think I will try to make it to the Coast at least once a month. I think Eddie had fun, too. I will try to post pics soon!
Friday, August 27, 2010
Dr. K called me yesterday, while my son and I were searching for his game. He told me he had talked to Dr. D from UW. And he said, and I quote, "Now I am confused as to what to do."
It seemed to him (my doctor) that Dr. D said to go ahead and do what he thinks he should do in terms of my care, but if at all possible, if we can manage the symptoms of the inflammation, could we wait to start anything, at least until my next scheduled trip to Seattle. So the message he got was go ahead and treat but they really wish you wouldn't. Dr. D said that they would like to give the treatment the time it needs to really work.
So I suspect that many might be concerned about my doctor admitting that he was confused. But I am not. I like that he is truthful and honest with me. There haven't been many Phase III clinical trials for patients in my situation. Even Dr. D said that the "inflammatory flare" that she thinks happened to me was only something she's read about in the literature. The trial I am in is a Phase I/II trial, which means that they don't know what will happen - that is the point of a trial like this. So it leaves my medical team wondering about the best course of action: wait and see if the t-cell infusions work, which might be 6-10 months (which would be December 2010 to April 2011 for me)? That might risk further progression of the tumors, maybe so much that it gets out of control.
Do radiation now, which would get rid of the third boob, but would also kill off those lovely t-cells we worked hard to produce? In theory, I think my body would continue to produce t-cells, but maybe not in the quantity that I had after the infusion (16 billion is a lot, I assume). Radiation would improve my sleep - my lower back is achey after sleepy on my back or belly for weeks now. I can't sleep on my right side (lots of scar tissue damage from surgery and radiation and lymphedema) and now I can't sleep on my left side because of the nodules, inflammation, and tissue necrosis which is located under my left armpit, towards the back.
I have appointments with the radiation oncologist and my regular oncologist next week, plus one with my acupuncturist.
I do have a lot of purple-gray skin where the nodules are, which Dr. D says is tissue necrosis, which is mainly dying skin. This is a good thing because it means the t-cells are there working to kill the cancer there in the skin.
Radiation would probably cause more inflammation and probably means more pain. I might have long term side effects like I do on the right side in terms of lymphedema, which means I might be doomed to be a back or belly sleeper for the rest of my life . . . And there would be some tissue damage, too.
Hmmmmm, what to do? At the beginning of this week, I was pretty sure I would do radiation. But now upon further consideration, I might wait. I will know more after I talk to the docs next week. My next appointment at UW is Sept 16. So, maybe let Dr. D see the area before starting new treatment, see if this gets better, and then go from there. I think now that the purplish gray is a good thing. My body is doing what it needs to do, so I should just let it. Give it time to do it's thing.
Patience is a virtue. As is honesty. I also like being the one to make a decision for my treatment . . . Dr. K, I think, is used to frightened people who just want the damn cancer to go away. He isn't so used to having a patient like me who questions every step and who takes an active role in my own treatment. And that's a good thing. I like him because he is willing to listen to my concerns and to let me make my own treatment decisions. It is very empowering.
I want to avoid taking any kind of taxol (Taxol, Taxotere, Abraxane) chemotherapy or any kind of chemo for that matter. It seems to be that that kind of chemo, while it bludgeons the cancer, it also bludgeons your body's immune system, making it harder for it to fight any cancer that is remaining. So it comes back, eventually, and then you have to keep resorting to the bludgeon and each time, you get weaker. That isn't for me.
That is why I say that I am trying to heal from the cancer, not fight it. As my friend, R said to me last year, have I tried loving the cancer? It is a part of me after all. Isn't hating it like hating myself? The cancer is my own body's cells going out of control and my immune system is so weakened from so many artificial toxins in our environment that my body can't get it under control. This is what Chinese Medicine says is going on and I tend to believe it these days. The trick is to help support my own immune system. So I will listen to what my acupuncturist says, too, next week. She just came back from a weekend workshop with her mentor, who specializes in cancer, and she's anxious to share what she learned from him with me.
I will end with this thought: the last CT scan I had mentioned a very small suspicious spot on my liver, so I asked Dr. K what he thought about that. His answer: you are too healthy for it to be cancer.
I credit Chinese Medicine for that.
I think this all means that I will wait, at least until mid-Sept, to figure out what to do. Give my body plenty of opportunity to rest and relax. And make monthly trips to the Coast, I think.
Thursday, August 26, 2010
We left for the Oregon Coast on Tuesday and got to Newport at lunchtime. We ate Mo's on the bay front -it was about 84 degrees in Newport. After lunch, I watched the kids bark at the sea lions, then drove to Lincoln City. It was cooler there - about 75.
After we got into the house, we went to the beach; however, it wasn't clear when I rented the house that it wasn't the ocean beach, but the Siletz Bay beach. We went to the bay beach and it was low tide - so it was a muddy/sandy walk to the water.
Then back for dinner and then we went to the beach for the sunset. Beautiful! When we started back to the car, we wre surprised to see the full (or almost full) moon has risen to the East! Wow, a sunset and moonrise al within a few minutes.
The house is kinda funky but it works. It's an old 1930's cottage with some additions. There's a hot tub which the kidsmhave really utilized.
Yesterday, we tried to go to the beach after we dropped off the rental car, but it was cloudy and windy. The kiddos flew a kite but it was really cold down on the beach. I took Eddie and Connor to the Arcade. Then I was able to go to the casino where I won $20! Then, I suffered from withdrawals, I think, because I got the chills and was really tired. I napped a little and I think I lost one of my turtle earrings from Hawaii. I hope I can find it before we go.
Then, today, we ran to Newport trying to find a Wii game for Eddie. No luck after several shops, but I did win $18 in lottery tickets. Then back for lunch, then We all went to look at shops near midtown Lincoln City and I found a shoe insert/arch support for my plantar fascitis. Then to the beach near Mo's where the boys and I hung out watching the waves. I saw a few seals in the surf and a murre (or cormorant?), the boys found a sand dune to roll down. Then back to the house for dinner.
I think I am heading back to the beach to watch the sunset soon. So far, a mostly relaxing time although it is hard to keep kiddos busy!they easily get bored!
Monday, August 23, 2010
I managed to finish my list of to-do's today, which was nice considering how I felt yesterday with the withdrawal symptoms. Today, I have only taken half a pill, a quarter of one this morning and a quarter this evening. I was just getting the chills before I remembered to take it. It took an hour or so, but I finally got rid of the chills.
The radiation oncology dept. called me today to set up a consult with one of their doctors, but the only appointment was tomorrow afternoon, so I scheduled it for next week. Then, they called back with a morning appointment but it was the same time as another one that I have and I really want to go to that one. It's funny. I started complaining about the modules during the first or second week of July, but it took the docs about 5-6 weeks to biopsy them and now that they did, they want me to start NOW! But I am heading to the Coast tomorrow and I will not delay. They made me wait over a month, now they can wait a week. Most of the pain is gone - just a twinge and Tylenol takes care of that.
I had a productive day, ran several errands this am, met with a student, made phone calls, reserved a car for our trip to the Coast, picked up more herbs from my acupuncturist, hinge out with Eddie in the backyard, finished doing an assessment of an online course, recorded myself reading a chapter I wrote for a college class at Alaska Anchorage, sealed the tile on our fence project, and started to pack for the Coast.
Yep, we head to south Lincoln City (near Mo's) tomorrow morning. It is supposed to be an unprecedented 80 degrees in Lincoln City tomorrow. We'll take off around 11:30am and get there about 1pm. We can't get into the house until 4pm, so we will eat and play on the beach until then.
I cannot wait! I so love the Coast. The ocean relaxes me like nothing else. I promise to post pics. We will have four kiddos (Eddie, his cousins, and my niece's friend), my folks, my brother Scott, my sister, Rena, and me.
Walks on the beach, maybe a visit to the arcade/casino, maybe a visit to the Outlet stores and antique and books stores. Walks on the beach. And, oh yeah, walks on the beach!
I went to the Zimbabwe Festival today with a couple of friends today. Listening to the marimba bands was really kinda cool and I had fun browsing the arts and crafts booths. I bought a $5 pair of abalone and coral earrings, half of a cloth with a pretty floral blue and white pattern on a black background, and a small statuette of a mother carrying her child on her back. The statuette reminded me of Eskimo "umaqqing", which is when moms or older kids carried a baby on their backs under their parkas. It fits nicely in the palm of my hand, almost like a worry stone. I have a turtle necklace that I bought in Hawaii last year with a baby turtle on it's back. I figure the two remind me of one major reason why I continue in my efforts to heal myself from this cancer: my son.
Well, that got kinda heavy! In other news, I felt a bit shaky and had chills with flu-like symptoms with occasional sweats. Thought it was a digestive issue or I caught some kind of flu or ate something wrong yesterday.
I had last taken a 50-mg tramadol pill yesterday at noon. Tramadol is the name of the pain pill I have taken for almost four weeks now. Two weeks ago, I had as many as 6 or 7 pills in one day. But on the last week, I had gradually de erased it as my pain lessened. I think last week, I may have had only 3 or 4 at a time. Then on Thursday, the UW doctor said I could take anti-inflammatories for 72 hours to decrease the inflammation and stop taking the pain pills.
By Friday, I had less pain, so I think I may have only had 1 or 2 pills all day. Then just one on Saturday. I woke up at 3am feeling achey all over and couldn't get comfortable and go back to sleep. I finally took some Tylenol and fell back asleep at 4:30am.
This evening, I still didn't feel right, with muscle aches and chills and a bit of pain in my armpit, so I took a pain pill in the hopes that I could get a good night's sleep. Within an hour, the chills and aches were gone, so I began to suspect that I was going through withdrawals.
Looked up the symptoms of withdrawals and, yep, that's exactly what's going on. So, I could either go cold turkey or gradually wean myself. I am going to opt for the latter because I have some things to do tomorrow, like laundry and a couple of work things, before we head to the Coast on Tuesday. So, my plan is to only take half a pill for two days then quarter of a pill for a. Ouple of days so I can enjoy the Coast without feeling like I have the flu.
Criminy, why didn't the doctors tell me that withdrawls were a possibility? I would've been more careful about how much I took (never more than prescribed) and would've maybe started to wean myself sooner.
Ah well, live and learn. That's all one can do with this disease!
Saturday, August 21, 2010
I will say this: the AdSense ads are encouraging me to write blogposts that are not just about my cancer status. I will say, however, that I have not yet heard from my doctors about the next step. Which is fine. My family and I are heading to Lincoln City for five days. We leave on Tuesday. Yay!
In other news, we attended Baby Goo's birthday party. Technically, he is baby Jeremiah, but that is his dad's first name, and as we call his dad "Gooey" or "Goo" (long story about the mispronunciation of his last name), I have taken to calling him Baby Goo. He is also named after my Uncle Gabe, whose Eskimo name is Aakagak.
Baby Goo's birthday party was held at Fort Hoskins Park, located west of Corvallis. It was a nice afternoon, relaxing. Good food. Good company (several of my former students and their families). What else can I say. Once I get a chance, I will post a photo or two.
I am almost done with a mandala for a friend. And almost done putting up tile on the fence. I have a couple of work things to do - maybe tomorrow morning. Okay. Gonna work on the tile.
Thursday, August 19, 2010
I just had my blood drawn today - we hadn't checked my CEA results for over 4 weeks. The number went up to 50.9, from 44.3 last time.
Dang! But another argument for starting a new treatment. Here's my history:
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
It's not a huge jump, but a jump nonetheless. Time for this number to go down down down!
Dr. K. did a biopsy on Tuesday and his office called with the results of it today. The news? The nodule he removed from under the lymph nodes was positive for cancer.
My interpretation is that the cancer is trying to run away from the t-cells in the lymph nodes. So, it ran away to the skin.
This is what I wrote on Facebook earlier today: "We, meaning my docs and I, knew that that cancer was in the lymph nodes. The cancer migrated (I.e., ran away from the t -cells in the nodes) to the skin area, so it wasn't much of a surprise. The UW doctor said that I may be eligible for another trial, which uses a topical treatment plus Abraxane. They are having "remarkable" results with that, apparently. I will find out later what they decide. I am just tired if this "third boob" under my armpit!"
So, now it needs to be treated. But Dr. K. is going to talk to Dr. D. from UW about what the next step will be. I will post when I know more!
I had a nice long conversation yesterday with one of the doctors from UW. I'll spare you the details - in terms of the biology because I'm not sure I quite understand it very well. In the end, the increased pain was probably due to what she called (I think) an inflammatory flare, an intense inflammatory response. The lymph nodes are surrounded by capsules, which are covered in nerves. The t-cells get into the lymph nodes. The t-cells then get into the capsules and become inflamed, causing me to feel pain.
Now, Herceptin, since it is a monoclonal antibody, sorts acts like a catalyst to the t-cells (presenting antegens, or cells that present for antigens?). The Herceptin supercharges the t-cells, intensifying the inflammatory response and hence, more pain.
In addition, the increased pain was probably caused by air travel. So, until the inflammation goes down and the lymph nodes shrink, I don't think I'll fly.
So, now that we know what causes the pain, I know what to avoid. I will stay off Herceptin, for now, and not travel.
In addition, the doctor, Dr. D., said that what they are seeing clinically is that the effect of the t-cell infusions don't really kick in for 6-10 months. She reported that the patients in the trial (and in a previous trial) went back on a standard treatment after their participation in the trial ended, but then, all of a sudden, the treatment they get begins working very very well - in that 6-10 month period.
Good news - but now I can expect that my treatments will really become effective around the holidays or sometime into the spring.
In the meantime, what treatment will I get? Dr. D. and Dr. K. are discussing it sometime today and they will let me know. I may be eligible for another trial that they are running at UW, but I'll discuss it all in a future post!
Also, Dr. D. said I could take Ibuprofen for 48-72 hours to try to decrease the inflammation, and hence the pain. Yay!
Man, I'm so glad to get a good explanation for what's going on!
Wednesday, August 18, 2010
I usually don't discuss my shopping habits on this blog, as it is not directly related to the purpose of it. However, I enabled the monetize function on the blog and now Google's AdSense is putting ads in the upper right hand corner. AdSense, from what I understand, uses the content from the blog to decide which ads to display. I just clicked through my last few posts to see if the ads change, and yes, they do, depending on what I talk about. So this post is an experiment to see what AdSense displays.
While I was in Alaska, my suitcase broke - the handle broke off near the bottom and that somehow affected the way the wheels turned. So after I visited the ER, my cousin, C., took me to Kohl's. I found a sturdier suitcase on sale, for $90. About $60 off. But I also received $10 in Kohl's cash.
I know this is a ruse to get you back into the store to purchase more things, because, really, what can you get for $10? On the other hand, it is $10 off of whatever you buy.
Well, it is back-to-school season, meaning time to buy Eddie new school clothes. And the stitching was coming apart on my purse. In the end, I bought two purses ( one for mom because she can't find one that fits everything), two pairs of athletic pants for Eddie ( he doesn't like jeans), and three summer print t-shirts for me, mom, and dad. I also had a 20% off coupon. I got that whole list of stuff for $59!
Not too shabby, eh? : )
Tuesday, August 17, 2010
Dr. K. decided to do another biopsy, this time under the big purple swollen area. He got one of the nodules there, I believe. I guess he didn't want to wait until I see the surgeon on Friday.
He really didn't want to talk about what the next steps are until we get the biopsy results. However, I did get something out of him. In the end, what it boils down to is that I am getting very tired of having these swollen lymph nodes in my armpit. I don't feel comfortable wearing anything sleeveless. And I am tired of the pain. So, depending on the biopsy results and in consultation with the UW doctors, I will probably have radiation to that underarm area.
Usually, they don't want to do this as radiation does scar the tissue, in this case, the lymph nodes. However, the lymph is starting to back up to the nodes under my collar bone and that could then lead to lymphedema in my left arm.
Which is the lesser of two evils?
I also asked about being very sensitive to smells and he said that it improbably due to my heightened immune system. Which is what I said in yesterday's post.
No other news at the moment! Have a great day!
Monday, August 16, 2010
I had a fairly uneventful weekend. Watched my softball team play in the playoffs, although I placed myself on the injured list. Still too much pain in my arm. They lost on Friday but won on Sunday. They/we are supposed to play on Friday this week, but 10 members of our 13 member team will be away on vacation.
Tried to beat the heat -it was in the 90s most days - ran errands with Eddie, played in the water with him in the backyard, went to Home Depot to build a planter for the area to the right of the garage, garage sales, etc. Mundane stuff.
I helped dad paint the trellis today ( after working for a few hours this am, writing emails, editing, etc.,) and afterwards, I rested in the house where it was cooler. But gradually, I started feeling nauseous/dizzy/woozy. And I was tired and sorta napped a couple of times.
This is exactly how I felt two weeks ago, when I was at my cousin's house in Nome, after I had an interview with an elder whose house reeked of cigarette smoke. Today, I did catch a whiff or two of paint fumes, even though I tried to avoid it. I also feel like this whenever I smell cigarette smoke when I am out and about, but usually not for long since I move away from cigarette smoke pretty quickly.
My point? It seems to me that, at the moment, that I am now super sensitive to toxic fumes (like cigarette smoke or paint fumes). And if I am around them for an extended time, I get nauseous and tired. No energy. Complicated by the pain pills which can make me nauseous or drowsy, so I may be more sensitive than normal for me.
I think my body is strongly encouraging me to stay away from these potentially carcinogenic materials. My immune system may be on high alert after the t-cell (Herminator-2) infusions. It is trying to protect me by warning me to stay away from such fumes.
So, guess what my strategy is? Stay away from the fumes. Particularly as ling as I take the pain pills.
Okay, I am going to rest again!
Thursday, August 12, 2010
Dr. K. just called me with the biopsy results. The good news is that there was no cancer! Yay!
The bad news is that Dr. K. wants a surgeon to do a deeper biopsy, closer to the center of the lymph nodes. There are several larger (0.5-1cm) nodules and the area is really purple. So we will hopefully do that next week.
But for now, cautious optimism! :)
Today, I didn't have any appointments, so we drove to the coast. Maybe too much driving around, but we got to visit a couple new beaches, found some interesting rocks with shell indentations on them, and just enjoyed time away from the computer. Yay!
Tuesday, August 10, 2010
After my son's birthday party, I grimaced or something and Eddie asked me what was wrong. So I told him that I had a lot of pain under my armpit, then I let him feel it. His response, "That feels like a boob." which I found kinda amusing because I had been thinking to myself that I could start calling it my third boob.
You see, ya gotta keep a sense of humor when it comes to cancer!
Anyway, I had a visit with my oncologist, Dr. K., today. I told him about the increased pain and doubling my pain pills as well as how my trip to Alaska went in terms of balancing the nausea against the pain. I also called the nurse with the UW clinical trial about what they might suggest. The nurse talked to one of their doctors and the answer was to do a biopsy. The UW nurse was concerned about the purple coloring that covers almost half of swollen area.
My acupuncturist says that Chinese medicine would say the purple is stagnant blood. This supports my theory that my increased pain, which started up a few days after my last Herceptin treatment, might be due to Herceptin getting stuck in my armpit.
Dr. K. said that the purple might be caused by the creation of new blood vessels, so the cancer is creating it's own blood supply.
Either way, this is not an optimal situation.
In the end, Dr. K. Decided to do a skin punch biopsy, so he did the procedure in the exam room. I let one of his newer nurses observe the procedure. When you get to this point, you lose any modesty in medical settings. I figure people need to learn the ropes, too.
Anyway, Dr. K. also brought in Dr. McG., my radiation oncologist, to look over the site. The bottom line is that Dr. K. thinks that the cancer is in my skin there. That kinda accounts for the red streaks that are moving up toward my collar bone. Hence, the biopsy. And the reason to bring in the radiation oncologist. I may be in for radiation again.
But I may have to wait until November, after I end my participation in the clinical trial. I will know more after we get the biopsy results. And Dr. K. will confer with the UW docs.
So, hopefully, sometime in the next few months, I will no longer have a third boob!
Monday, August 9, 2010
Acupuncture was good for me today. I let out a lot of emotion. B., my acupuncturist, said that I am feeling pain because my body is trying to catch my attention. My task is to figure out what the message is. One message, I think, is acceptance (of the limitations I now have from this disease) and to be okay with uncertainty.
You see, I had this expectation that I would have less swelling in my lymph nodes by 8 weeks post t-cell infusion because that is what happened to the guy who had advanced melanoma. His tumors disappeared by 8 weeks. My 8 weeks are up this Thursday and it's not happening. So I am frustrated because I want to go back to being "normal" with the ability to do all sorts of things like travel. In other words, I want to go back to being busy busy busy.
But the turtles in Hawaii were telling me to slow down. I keep forgetting to do that. Perhaps the pain is reminding me to slow down. To realize that while work is important, then rest of my life is important too and I need to nurture myself and my family just as much.
So B. told me that I should probably get rid of the expectation and let the universe do what it needs to do in its own time, not mine. And to not measure myself in terms of my colleague's output, but slow down. Get off the academic merry go round, so to speak, and just do things in my own time. To accept my limitations (I.e., not do as much as my colleagues) and to accept that maybe I should stop playing softball and be okay with that.
And, to accept that whatever is causing the pain is what it is. I don't need to know why, just realize that "it" is there and to be okay with not knowing. I need to go back to living in the moment. I need to write gratitude lists again. I also need to be okay with uncertainty.
In the end, I am projecting into the future again - thinking about the "what ifs?" and "why" but when you worry like that, you are not enjoying the time you have today. When you constantly wonder why, you forget about all that you are thankful for.
So, thank you for the reminder, B. And thanks for listening, R. And thanks to all my cousins and all the other people who took care of me in Alaska. A big thanks to my parents for taking care of me when I came home. I am sorry that I have been such a pill. Thanks to my son for reminding me what's important.
And, dad, I will try yet again to slow down! LOL
Sunday, August 8, 2010
I arrived back home yesterday from Alaska. The last few days I was there, I didn't have great internet access, so I wasn't able to blog.
Overall, it was a good trip. I learned a lot - some in casual conversation with my cousin and with others so I didn't write it down (but maybe that's best as it was political) - and had four good interviews. I went to Unalakleet, a place I had never visited before. I have to say that this village (around 842 people) was, on the whole, fairly healthy compared to a couple of other villages I've been in. There was a lot of construction going on - they were building a seawall (in case of coastal erosion) and paving the roads. Lots of people were fishing, for themselves and when they got enough for themselves, they also did some commercial fishing. People were berry picking, too. Blueberries and salmonberries (also known as cloud berries). Nome had lots of blueberries, too, but hardly any salmonberries.
The people in Unalakleet were very friendly, too. I went to the Peace on Earth pizza place for dinner on my first night, and while walking home, a lady (D.) on a 4-wheeler stopped and said, "are you Deanna?" and I said "Yes I was" and she said that someone on facebook told her to say hi to me. Then, D. said, "Do you want to come to my house? I'm going to have dry fish, seal oil, and sura (willow leaves)." Even though I already ate, I said, "Sure!" I'm not stupid, you never turn down niqipiaq (Eskimo food or "real food") when it's offered to you.
D. spoiled me. We ate dried salmon (humpies), miziGaq (seal oil) sura, tugiyuq (sea lovage), masu (Eskimo potato), plus maktak (whale blubber, which I never got used to) and a couple of other things. Mmmm mmmm good!
It was really nice visiting with D. She talked to a lot of elder ladies about skin sewing and is trying to pass this skill down to the younger generations. She is also really interested in archival documents and photographs - she had even heard of Father Bernard Hubbard, the "Glacier Priest", who took lots of pictures on King Island and about 20 hours of film, from 1937-38.
The next day, I went to Peace on Earth (free wirelesss internet) for lunch and then I got hold of an elder to interview - she brought me some dry fish, too. At Peace on Earth, about 12 military guys were waiting for their pizza - Air Force, Army, and National Guard troops, who were doing some training, I think, in their helicopters. They flew in for pizza and then wanted to fish a little bit before moving on. (I thought it was ironic to be sitting at a place called "Peace on Earth" with military guys.)
After the interview with the elder, I went to D.'s for dinner - she prepared fresh caught trout and also king salmon and halibut, with a salad, andfresh baked bread. Yum!!
The next day, I was to have an early morning interview, but I think my interviewee forgot. I went back to bed to sleep in. I've been sleeping a lot - I think the pain meds make me drowsy. After lunch, I interviewed another board member and then went to visit the President of Bering Straits Native Corporation - who then invited me over for dinner.
Both talks went well, then I went to dinner and afterwards, T. (the President) and his wife (R.) took me for a drive on the only roads around Unalakleet. That was cool. Saw where there used to be an old Air Force base, that was decommissioned in 1984 (? or was it 1976?). There was a nice view down into the Unalakleet valley.
The next morning, I visited T. again - got a second more substantial breakfast - and then back to D.'s house to pick up dry fish (she wanted to send me home with some). Then, I flew back to Anchorage.
The only thing that marred my trip was the pain and/or nausea that I had. I started a pain medication just prior to my trip - the swollen lymph nodes under my left armpit started giving me constant pain - and for a day or so, I ended up with nausea, just prior to flying to Unalakleet. I think I had too much caffeine (diet pepsi) and maybe not enough food. I started getting nauseous on Monday afternoon (had visited an elder whose house reeked of cigarette smoke) and I couldn't shake it the whole rest of Monday and even the next morning, I felt nauseous. So, I made sure I ate lots of bread, less caffeine, and then was able to fly to Unalakleet.
But by Thursday/Friday, the pain pills weren't working as well. I would take one and it would work until about 5 hours after taking it - I could take it every 6 hours. But I started feeling constant pain about an hour after taking it. By the time my cousin picked me up in Anchorage, the pain was really bothering me, so after dinner, she took me to the Alaska Native Medical Center's Emergency Room. In the end, they said I could double my dose of the pain medication, Ultram (tramadol) (or start taking a narcotic) and I could take Tylenol in-between times if I needed it.
I had an early flight home on Saturday - I felt okay, just tired, so I slept most of the trip. Made sure I ate breakfast. But by the time my folks picked me up, I was nauseous again from the pain pills.
I spent most of my time yesterday resting, dozing, and just eating small amounts. The nausea is mostly gone as long as I keep some food in my belly. I slept about 9 hours last night and then got up and had breakfast. I picked up my son from his dad's (yay - soooo good to see him! I really missed him!!) this morning. But now I'm tired again.
I think with the pain pills that I need to take a double dose, then six hours later, a single dose, then a double, then a single. For now, that seems to work. The double dose keeps the pain away and then the single dose kinda keeps it away but I get less nausea.
I'm supposed to have Herceptin tomorrow, but I think that that triggered the increased pain, so I'm going to cancel tomorrow until I see Dr. K on Tuesday. I'm already tired of the pain. The swelling isn't going down. Something's got to give . . .
Sunday, August 1, 2010
I have been in Nome since Friday. I attended the funeral of one of my cousins' kids, who died at age 31 of a heart attack. I think he had a heart condition. Then there was a potluck with Native food. Lots of people from the community were there. It was nice to see them all, even in such sad conditions.
It is so easy to fall into summer life in Nome. Staying up late, until midnight or 1am and sleeping in. I also feel like I never left. It's a nice feeling.
Got more to write about, but gotta go. Heading to camp again! Everyone I wanted to visit is gonna be out there. Went yesterday, now again today. I will also get to pick berries! Yay! Who needs to do paperwork, huh?