Another biopsy

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!

Super Sensitive to Smells

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!

Cautious Good News

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!

My Third "Boob"

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!

Relearning Old Lessons

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

Back Home

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 . . .

In Nome

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?

More later!