Baby Steps, Day 1: It’s Christmas Somewhere

I know I should write about Christmas, food, faith, or whatever.

But in a text from my cousin Kelly earlier today, she reminded me that baby steps are good.

Today, my gift was to wake up on my own couch in my own apartment. First time I’ve done that since my birthday, 3 weeks ago. The intervening time has been spent, you might recall, in surgery and recovery from a recurrence of cancer.

The surgery was December 5 and it was another 10-11 hour ordeal for the surgeons who pulled a 5 cm tumor from my neck and then reconstructed the tissue using tissue and bone grafts from my right leg.

Just like with my first surgery in March, the actual surgical sites dealing with my cancer are healing well, according to doctors and nurses. What is NOT healing sufficiently are the two things that ensured I could eat and breathe throughout this ordeal. After side effects, set backs, and weeks of sleepless nights (thanks to fluid buildup and secretions around my tracheostomy site, even after the hardware was removed), my nurse finally allowed my feeding tube to be removed on Monday, December 23. I told my Mom that was her birthday present.

So yesterday, after a slow morning at Hope Lodge and a few parting conversations with fellow residents, my car was loaded and I made the journey home. At the time of writing this, I still haven’t unloaded my car fully, but I’ve been cuddled under blankets on my own couch watching Netflix and trying to teach myself how to drink liquids again. I’m going to be on a liquid diet for the foreseeable future due to the slow progress of my trach, but at least I tasted coffee today.

Baby steps.

Anyway, there are two people that I need to thank because, without them, I wouldn’t have made it through the last three weeks: my friends Tam and Rebecca. Tam helped me while in the hospital and Rebecca helped me at Hope Lodge. Both advocated for me to doctors and nurses, walked with me while I tried to get back on my feet, sat with me while I coughed up endless amounts of goo from my trachea, found me the supplies I needed, and generally worked to keep my spirits up during this truly miserable time.

I wouldn’t be at home tonight on my own couch if it weren’t for those two ladies.

The Past Few Weeks… and What I Am Doing For My Birthday

For those of you who wanted answers or an update, I apologize for my lack of communication. It has been a really long couple of weeks. And it’s about to get longer. Here’s the timeline as much as I can remember:

• Since the FNA biopsies on November 12, the site on my neck has been oozing clear fluid periodically. I am guessing this is a small portion of the lymph flyid that has been building up in the ‘black spot’ from the CT images.
• November 19 – PET scan. After my imaging, I went downstairs to the head and neck clinic and waited for my sugeon and his team to review the images. I was called back to an exam room, where my surgeon, an intern, the speech/nutritionist, the clinical nurse and the nurse practitioner were gathered. This was getting to be a familiar scene. Eventually, the social worked joined us and Dr. Hunt took me through my images. Long story short, there was evidence of cancer again in my upper neck. The mass is pressing on nerves and my voice box, causing my headaches and weird voice problems.
• Dr. Hunt ordered a new round of ultrasound biopsies for “as soon as possible” and sent me on my way. I was told to prepare myself mentally for surgery in December.

Imagine trying to go back to your full-time job – and getting anything done – after all this. I drove home from Salt Lake to Kemmerer (about 120 miles) in a slight daze, wondering when my appointment would be.

Wednesday, Novemeber 20 proved snow was in the forecast, so when I woke up, I texted my superintendent a list of items I would get done that day and settled in for teleworking from home. Thankfully, many of my daily tasks for work can be completed whereever my computer and I can find an internet connection.

At 9 a.m., my phone rang. It was a clinician from the group ordered to complete my next round of biopsies. The only appointment was for the very next morning. Oh, and if I wanted to be sedated during this procedure, I needed to find someone to come with me. I sort of panicked:

1. I was just at the hospital yesterday. I have to drive back by tomorrow?
2. I need to find someone to go with me or I can’t have sedation to get me through an obviously painful procedure? (If it wasn’t awful or painful, why offer sedation in the first place?)
3. OMG, a look outside revealed snow was falling at a fast pace. I had to drive in that? If I didn’t leave soon, the roads would be worse, the interstate might close, and I wouldn’t be able to get to Salt Lake at all by tomorrow morning.
4. If I did drive to Salt Lake today, where would I stay overnight before my appointment?
5. What about all of the tasks for work that I just told my boss I would accomplish today?

So. I texted my boss again (she hadn’t responded to my earlier text, so I was assuming what I sent her was acceptable). Then I left a voice mail for my social worker, requesting housing for that night if possible, since the weather was bad and I was driving back ahead of my appointment the following morning. I also texted a friend who lives just south of Salt Lake, apologized for the late notice and asked if she would be available to help me the next morning so I could have the sedation during my biopsy procedure.

I took a deep breath, ran through the shower, packed up my work computer and papers, threw some clothes and toiletries in a bag and loaded everything into my car.

The drive back to Salt Lake was not nearly as bad as it could have been. The snow was building up on the vegetation alongside the roads, but the roads were mostly just wet.

There is a stretch between Kemmerer and Salt Lake where I don’t have cell service, and when I got past that area, my phone started dinging. My supervisor texted that she had been out shoveling snow from around visitor center. She wished me luck with everything. My friend Amy left me a text that she, or her husband, would indeed take me to the appointment. If sedation is offered, it is obviously for a reason, so duh, yes, do that! We will find a way to get you there and back to whereever you are staying, just let us know where.

The next phone call was from the young woman at Hope Lodge who was doing the scheduling that day. Did I want two nights? I said yes!

Another hospital tech then called saying that I had been scheduled for pre-op CT scans. These were to confirm no blood clots in my extremities that would cause complications during surgery. That appointment was to be in the afternoon, after the biopsies.

November 21 was turning into another all day affair at the hospital. I was so happy to have two nights at Hope Lodge, so I didn’t have to drive home after that long day. (As it turned out, the storm was bad enough to close I-80, so staying in Salt Lake really was my only option anyway.)

(((If you are lost as to what day/time it is, at this point, it was about Noon on November 20th.)))

I pulled in to Salt Lake, to find temps much warmer than Kemmerer, mostly dry roads, and a full coffee pot at Hope Lodge. I got my room assignment, said hello to the staff, had a bit of lunch, brought up my stuff and settled back into telework mode. I was determined to get some work done before my appointments the next morning!

I was reminded how nice the beds are at Hope Lodge. I slept well.

November 21

• I couldn’t eat after midnight, except to swallow a bit of water with which to take my pills. My friend picked me up early, and we got to the hospital in plenty of time for my appointment.
• I was so glad for the sedation. I wasn’t totally asleep, and I think I jumped a lot. Actually, I was laying down throughout, and best I could tell, a CT was taken, the untrasound image was also completed and then a needle was shoved somewhere in my neck to remove a sample according to what the images indicated. This sequence was repeated several times.
• It was when the needle was shoved in hard (I subsequently learned the doctor sampled muscle tissue and cartiledge) in my neck that I flinched. Apparently, I apologized to the doctor for jumping, which I guess was funny. I was sedated, so who knows?
• When the doctor had enough samples, the attending nurse sat me up and waited while the sedation wore off. Eventually he walked me out to the waiting room to meet my friend. This had taken about 2 hours.
• When I was sufficiently cognizant, my friend and I went upstairs to the hospital restaurant to get breakfast. I got a Starbucks peppermint mocha. Some things never change. 😉 Then my friend took me back to Hope Lodge and she went on her way.
• I drove back to the hospital a few hours later, completely awake, for the next round of pre-op CT scans. They were easy and non-descript.
• I met with my surgeon and team after this again for a couple of minutes. Surgery is warranted, but the date given to my surgeon was too far out. Given the rate of how fast the mass in my neck appeared to be growing, he wanted surgery the first week in December if possible. My nurse would call to confirm surgery date.

Back at Hope Lodge that evening, I texted with my uncle. Using some of his frequent flyer miles (he apparently has an abundance), he arranged for a flight for me to come to St. Louis last minute for Thanksgiving.

Fast forward a few days. The nurse confirmed my surgery date is December 5, with a consulation on December 4 with the reconstruction surgeon.

My cousin Kelly picked me up at Lambert in STL. We went to lunch and discussed our current knitting projects, and had a nice little reunion. After a bit of shopping, she dropped me off at my nephew’s “soccer” activity (three-year-olds really don’t play soccer). My parents, brother and sister-in-law did not tell Braeden that Aunt Jenny would be there and he was all smiles when he saw me. It was so cute to watch him run around chasing afer the balls. He has come a long way!

This week has been filled with family and friends visits, good food, and lots of treats for Charlie Dog. It has been a nice diversion from the impending.

—-

As I write this, it is Sunday, December 1. Mom, Dad, Mark, Amber, Braeden, Tom, Jan and I are meeting for dinner tonight. Tomorrow, Tom and Jan fly back to Phoenix and I fly back to Salt Lake City. I hope the road are clear, because I need to get home to Kemmerer, WY for a lot of things. My last day at work (for a while) is December 3rd.

If you caught it, my 45th birthday is December 4th. But I will spend that day driving back to Salt Lake, and meeting in the afternoon with the surgeon who will assist Dr. Hunt and reconstruct…. whatever needs to be reconstructed in my neck.

Maybe I will get myself a couple pieces of See’s chocolate for dinner. That will be my last solid food for weeks and I want it to be good.

I cannot eat or drink anything after midnight on December 5. My friend Tam, a fellow Hope Lodge resident and cancer survivor is going to meet me at the hospital and stay there for the duration of my surgery and recovery. She will be the one to listen to the surgeons’ and nurses’ updates and let my family know what’s going on. Tam is a fighter, survivor, and very no-nonsense, plus she understands cancer situations and Huntsman Cancer Institute, so I believe she will be a good advocate.

Hopefully, by this time next week, I can text folks and give an update myself.

Distractions

So I spent this last weekend distracting myself from the realities of my current life. To be honest, I don’t have the energy to do very much, so I didn’t go anywhere besides my couch.

But what did I do?

1. I watched a couple of movies set in famous palaces in Europe. Because, some day, I want to visit all of those magnificent castles and palaces. Which settings do I want to see? At the top of my list (this week) are Chatsworth and Highclere in the U.K. and Peles Castle in Romania.
2. I rewatched (for maybe the 1,000th time) Murder On The Orient Express. You simply can’t get better than Agatha Christie, and you can’t get better than David Suchet playing Hercule Poirot. Also on my bucket list, I want to take the modern Venice Simplon-Orient Express all the way from London to Instanbul. Yes, I know how much that costs. I don’t care; you only live once.
3. While watching all of this plus about 10 cheesy Hallmark-esque Christmas movies, I was working on my various knitting projects. I have at least 7 projects going right now:
   1. An order of 5 pair of fingerless gloves (2 pair completely done already). I want to get these done over Thanksgiving.
   2. My MountainMist Sweater (pattern from Tin Can Knits). I altered the the pattern slightly because it called for worsted weight yarn and I wanted to use fingering weight, so stitch and row counts are off. But so far it fits. I’m just stuck working through miles and miles of stockinette stitch right now. I’m also using a different set of colors than the original, but if you search out this pattern on Instagram, you will find a version in nearly every color imaginable.
   3. Red legwarmers. Yes, I’m a child of the 80’s, but I’d rather not go for those color schemes. I’m choosing a slightly variegated cherry red. Now I just need to find the right boots and leggings to go with them…..
   4. A blue stocking cap. Not sure who this will be for, or if I will keep it. I found an interesting pattern on Ravelry that was free, so I started it. (Startitis is officially a condition with which I am dealing, seemingly forever, and for which I cannot find a cure.)
   5. Another pair of my Jewel Socks. I’d finished one pair a couple of weeks ago, and I have another pair started. The pattern is enough to keep my brain engaged but simple enough to let my mind wander a bit at the same time. (And now I just realized that I don’t have this project listed on Ravelry. Considering the pattern might be released for sale, I will have to remedy this situation soon.)
   6. I have a collection that I am in the midst of designing and constructing. I’ve done the basic hat, now it’s time for mitts, a cowl and legwarmers to go along. I’m using twisted stitches mixed with cables for the motif. I see each of these in my head; I just need to get the math done and get them constructed. Everything will be matchy matchy. 😉 And I’m hoping for a variety of sizes for, say, Mother-Daughter matching mitts or hats. Or something.
   7. I also spent a little bit of time designing one of my new sweaters. I really like the circular yoke from MountainMist (and many other fair isle sweater patterns that are uber-popular right now), so I’m thinking about using lace in a circular yoke. The sweater would be a solid color (no fair isle) with a slightly see-through lace yoke. Hmmmmmm. We’ll see what comes of it. I have enough dark red Tosh Merino Light (one of my favorite yarns!) for a good sweater for me.

My ‘problem’, if you were to call it that, really is the fact that my body just simply can’t keep up with my brain. Everyone knows that I love to design and create. I feel like I have so many ideas floating around in my head right now, and I just need the time and energy to make them all.

*Did I mention the tacky Christmas hat that I promised a coworker? The yarn for his hat should be coming in the mail today. Santa, trees and reindeer doing the right thing at the wrong time. The hat will be a mis-mash of other patterns all squished together in one, and I might just title it, “What happens when Santa visits a National Park for the first time.”*

See? Radiation for head and neck cancers is known to cause a lack of concentration or attention, and I think I feel it. Ideas bouncing off the bones inside my cranium, all going different directions and never. slowing. down.

Health Update (or lack thereof)

Since there are so many people who have asked, I’ve decided to put this all in one place.

First, let’s review 2019’s timeline:

30 Jan – first biopsy completed; oral surgeon tells me he doesn’t need biopsy to tell me that I have cancer.

6 Feb – oral surgeon calls me to confirm moderately differentiated squamous cell carcinoma. Refers me to Huntsman Cancer Institute at the University of Utah in Salt Lake City.

12 Feb – first visit with my surgeon and his team. My friend BJ went to this consultation with me and asked the questions that I needed to ask (but was too much in shock to think to ask). Treatment plan suggested, surgery scheduled.

7 Mar – surgery to remove two tumors (one on the right side of my tongue and a much bigger one in a lymph node on the right side of my neck), free flap reconstruction of the soft tissue in my mouth, partial neck dissection and submandibular gland resection.

14 Mar – discharged from hospital

9 Apr – start of radiation treatments

23 May – final radiation treatment

26 Jun – first follow up appointment, all looked good. Recovering from radiation at a normal rate (although I was really tired of the side effects). Referred for normal post-treatment schedule of follow-ups, testing, imaging, etc.

10 Sep – first round of post-treatment imaging. CT scans showed a dark spot in my neck. Radiology said it was fluid built up since the removal of lymph nodes and vessels. Surgeon concerned it was actually an area prime for disease recurrence. Surgeon ordered next round of imaging to be moved up by 1 month. (Normal results would have meant the next imaging in 3 months. My imaging was ordered for 2 months.) Thus began 60 days of worrying, increasing swelling in my neck and slowly decreasing ability to swallow solid food or speak well.

—and now we come to—

12 Nov – new CT images taken. ‘Dark spot’ has now increased in size a great deal. Surgeon and my care team convened in clinic room. Since Huntsman is a teaching hospital, I’m never alone with my surgeon. Today we had the surgeon, one of his current med students, a PA who was taking notes for everyone, a member of the nutrition/speech pathology office, my clinic nurse (Nurse Anne, my favorite), and my case/social worker.

First thing we discussed was the swelling/redness in my neck and my decreasing voice. The PA was dismissed to go retrieve a camera. (For those of you that heard about or saw my feeding tube while in the hospital, THAT experience was very foreshadowing.) The camera was fed up my nose and down my throat to get a view inside my throat and neck. It was broadcast on the big TV on the wall of my exam room. Totally gross. Also not very helpful. Yes, we could see swelling, but the tissue was colored appropriately and didn’t show any lesions. At least I didn’t gag on this like I gagged all the time on my feeding tube. With great cheering, the camera was removed.

After the surgeon showed me (and the whole team) all of the details in my images, he ordered needle biopsies (Fine Needle Aspirations) to be completed 15 minutes later. The pathologist and med student brought in a cart loaded with supplies and microscopes. A few minutes of sticking needles in my neck and the pathologist was happy with the samples she got. Unfortunately, these samples didn’t show anything obvious either. Cool bit – I got to look through the microscope and see what my red blood cells looked like. There were cells that showed sign of inflammation/infection (no obvious source of the infection either, no open wounds, etc.), but the pathologist said the preliminary review showed no cancer cells.

So, yet another round of testing with no conclusive obvious results. My surgeon is very cautious and worried about the growing black spot. He put me on antibiotics, in the hopes of dealing with any possible infection. PET scan ordered for next week with the hopes of understanding the tissue at the back of the black spot that might be a recurrence of disease. Additionally, I was told to prepare myself mentally for more surgery. After the PET scan, if he thinks surgery is needed, it will happen quickly.

Then the speech/nutrition team told me I needed to gain 3-5 pounds before my next surgery. Yeah, that’s going to be super easy. I’ve lost 40 pounds this year because I can’t eat without becoming thoroughly exhausted. But yeah, I’ll try. (My nurse practitioner Marie said it probably won’t happen. ha.)

After the appointment, I sat with Nurse Anne and Brooke (the social worker) for a while and talked about how I was feeling. These two women have been so helpful and supportive over the last 10 months. They both deserve a raise.

---

So how am I feeling?

Pretty much everything you would expect:

I’m tired of the headaches and pain in my neck.

I’m tired of being tired.

I want to be able to speak normally and with a decent volume. But that just won’t ever happen again. I need to get over myself.

I’m frustrated with having no real answers. Am I healthy? Obviously not, but who the hell knows? Should I sit around and cry about it? Maybe a little bit.

My friend BJ and I talked about how it’s ok to be down about the health trials we are both facing. I’m glad someone understands that. But Brooke congratulated me for facing this crap on my own, working through a lot by myself. She said that resiliency was rare and my strength was to be admired.

---

Like I said earlier, Brooke deserves a raise.

Locus of Control

A couple of decades ago in college, I had several psychology and sociology classes. I revisited some of the concepts in my graduate studies. And while I’m sure I don’t remember very much of what I learned back then, there are a few concepts that I have thought on a great deal over the last 10 years or so.

As a ranger in the National Parks, I was always confronted with questions from park visitors regarding some fear or trepidation they had: will I freeze to death? What if I fall? Will a bear eat me?

Fear of the unknown can be debilitating. It can hold us back from some of the most exciting and fascinating experiences, and generally (at least, from my perspective) does little to actually keep us safe.

Incidentally, so far in 2019, I’ve had to deal a lot with the unknown. A cancer diagnosis leaves you with far more questions than answers. So I understand what it is like to ask a lot of questions that even experts can’t answer.

However, I have had to think back a lot to how I answer such questions. In the parks, I was trained to always read between the lines and figure out what the visitor was not asking. So the actual information that might answer the initial question is not really what the person is interested in learning.

For instance, I have been asked many, many times if I was eaten by a bear during my stay in Alaska. While my initial response is to laugh and retort with something like, “I’m here talking to you right now, aren’t I?”, the person is generally asking me something more along the lines of, “I heard about a bear mauling a person on the news. Weren’t you scared anything like that would happen to you?”

My truthful answer? Not really, because I informed myself about bear behavior and how I needed to behave around these large mammals. I learned to read the signs in the landscape around me: Did the bear have cubs with her? What about the movement of the bear’s ears? What kind of vocalizations was the bear making? How far away was the animal?

While this is just one example from my park experiences, it brings me to the point of my essay today: my locus of control. You see, I learned a great deal, and allowed myself a wide variety of experiences, so that I could drive out that fear of the unknown. I was in control, as much as is possible.

In psychology, experts divide locus of control into internal and external. If you’d like a quick explanation of these, read this article. If I may be so bold, I’d like to think that I have a fairly internal locus of control – most everything is up to my ability and knowledge, and I must be prepared for whatever situation presents itself.

Just a couple of weeks ago, I had an interesting conversation with a coworker at my park. I was telling him that my neighbor in the apartment next to me had a tendency to be a bit loud. Whether it was the odd crash or bang, or sometimes even singing in the shower, the noises threw me off a bit.

This coworker thought for a moment and said, “You’re a single woman living alone. Weird noises must be alarming. Would you like some peace of mind? I can loan you the equipment you would need.”

I knew in an instant to what equipment he was referring. He was a gun owner and he was offering to lend me some sort of gun. He went on to remind me that, where we were living, I didn’t need any permit, so it was all legal.

I assured him I didn’t need anything of the sort, and the subject was dropped, no hurt feelings on either side.

But that conversation has made me think several times over the last couple of weeks. Where does my peace of mind come from? Would a gun help my peace of mind?

My answer: absolutely not. My peace of mind must come from inside me. Innate, internal, based on my knowledge and experience. No gun would actually cause me to have peace of mind if the knowledge wasn’t there. And if the knowledge is there, what could a gun add?

Yes, my neighbor was annoyingly noisy at times, but the fact remains that he was just loud. Not (to my knowledge) doing anything illegal or dangerous. He got up and went to work every morning. As he was a seasonal worker, this weekend was the end of his job and I believe he actually moved out last night, without event or incident. Those are the facts. Guns not required for everything that went bump in the night.

Similarly, I had another experience last week that some might find shocking. En route to New York City for a few days away from ‘life’ (my surgery team, including the hospital social worker, really push for their cancer patients to take such a vacation when treatment is done and testing/maintenance is still a ways off), the second leg of my journey – a flight from Chicago to New York – was cancelled due to weather. I was able to get on the next flight out and eventually made it to my hotel by about 11:30 p.m. I should have made it to New York in time for dinner, but I was still completely wired at 11:30 p.m. not only due to the time zone difference but also because of the adrenaline from travelling.

So what did I do at midnight? I filled up my water bottle, grabbed my hotel room key, and took off for a walk in the city. I didn’t bring a purse or bag – partly to avoid looking like I had something to steal and partly because I was tired of hauling my luggage around. I needed the water to combat the horrid dry mouth that resulted from my radiation treatment – without something drink, speaking is much more difficult.

Never having been to New York City before, I wasn’t entirely sure what to expect, but I wasn’t tired. And I am fairly adventurous on my own. My hotel was at the corner of 41st and Madison (a GREAT location, by the way, about a block from Grand Central Station), so I headed up 41st to 5th Avenue, turned right and started walking uptown.

New York really is the city that never sleeps. There was so much activity all around me: construction, garbage hauling, people working on window displays in nearly every type of retail store (but especially the high-end designer shops and department stores), and lots of people walking to where ever.

I learned an important lesson last week in New York through all of this: I was far more likely to get stepped on than mugged in New York. Stopping to look at a window display was often like taking my life in my own hands because people expect you to KEEP MOVING. I walked around several parts of the city, I took the subway numerous times, and I did this all on my own. Did I ever feel unsafe? No. Did I ever wish for my coworker’s “peace of mind”? Not once. I had fun conversations with complete strangers all week. I saw things I’d previously only seen on TV news or in movies. I was overwhelmed in several stores (you NEED to go to Mood Fabrics if you’re at all DIY inclined) by the choices and options I had. I learned I could feed my creativity endlessly in New York City.

But again, I learned and experienced a lot – so I know what to do and I know what I can handle and expect. I have so little fear of the unknown there that I have already planned my next trip to New York – I just have to save up the money. 😉

So I will pose these questions: Where is your locus of control? Does fear control you or have you conquered it?

How?

I’m dealing with a great deal of depression and hopelessness tonight.

And it has nothing to do with my cancer situation. Nothing to do with cancer at all, actually.

People know I spent a couple of years in Alaska, so it shouldn’t surprise anyone that I still follow some of the news, events, politics, and science coming out of The Great Land. I still have friends and colleagues up there. If I concentrate hard enough, I can still taste the wild blueberries I picked and canned. Blueberry-rhubarb jam, home-canned up there, is still my favorite jam I’ve ever tasted. Damn, those were good berries.

But the last couple of weeks, what has come out of Alaska has served to depress me a great deal.

It isn’t the wildfire news; I’m informed enough to know that wildfires are necessary and do a lot of good to areas that we as humans have mismanaged. Let’s stop the fire negativity right there.

What is really getting to me are the state budget cuts (vetoes) from the governor. According to the Anchorage Daily News, Governor Dunleavy cut $444 million from the state budget, ostensibly to do two things: balance the state budget and provide for a full Permanent Fund Dividend (for those residents of the state who choose to take such dividend).

Two of the biggest sacrificial lambs are the state’s education programs – all the way from Early Childhood education up through the state’s University system – and the state’s arts programs. Students who were previously awarded scholarships received letters like this. How would you react if that happened to your 18-year-old son or daughter? If you’d like a full list of the items vetoed, you can find information and links in this article.

Okay, so Alaska is a red state, the governor is a Republican, and the Lower 48 assumes they know what that means. Hard-working, gun-toting, small government, and definitely NOT a welfare state.

But here’s the kicker: the winner of the battle. The Permanent Fund Dividends. Not a balanced budget. Dunleavy made a campaign pledge to ‘restore’ the PFD to a full $3000 from the $1600 it was recently.

Extra money is good, right?

Well, it’s interesting. In order to get a PFD, you don’t have to be born in Alaska, you don’t have to be a long-time resident, and you don’t have to any any sort of job.

Yes, you read that correctly – the money is not worked for or earned in any way, except to apply online. Want to know the requirements for a PFD? Check out the State of Alaska’s PFD website.

Wait.

It’s the Republicans who are stripping education, senior citizens, health care and the arts. For free money from the state?

Somebody remind me just how the Alaska Republicans can justify NOT admitting they are taking advantage of the biggest [Welfare] state. And then go slap one of them for their insane hypocrisy.

Mid-Year Review

Early on, I learned my nemesis’ secret: stealth. It came in undetected, like a thief in the night, to steal not only my time and health, but also my strength, courage, and determination.

My nemesis thought he could steal 2019 from me. But all he got away with was a bit of tissue from my tongue and my neck, a few (unneeded) pounds from my midsection, and a bit of my ability to concentrate or focus.

Let’s review what he did not steal from me:

• My avocation, in the form of my job. The year started off with more than 30 days off the job, thanks to politicians and The Big Orange One in DC. But despite their best efforts, I still feel quite strongly about our National Parks. Since radiation ended, I have met every deadline, every report, project, and task thrown at me. I am tired, yes, but at least I kept up. There is still much to be done.
• My background in the sciences and my desire to read even the most tedious data. I am still happy to discuss with people just how humans impact our climate too, even if people want to live in denial. It all has to do with soil and water, systems we have really screwed up. The facts are staring us square in the face; we just need to grow up as a species and admit what we have done.
• My health overall. Cancer is a bitch, but I still have excellent blood pressure, no signs of heart disease, kidney problems, diabetes, or just about anything else I was tested for. And believe me, I have been tested. Cancer has left me feeling numb and very UNenergetic. But those two things are attributable to the liquid diet, lack of solid food for weeks on end, and side effects of radiation. I am down from a size 16/18 in pants to a size 12 at the moment. My doctors kept threatening feeding tubes, but I resisted and I am better for it. 45 days out of radiation and I can taste most food again and am looking forward to trying new foods when I get to New York in 20 days.
• My creativity and my desire to make things for myself. In fact, while going through radiation and staying at Hope Lodge, I designed a new scarf/wrap pattern which I hope to have ready for publication this autumn. I am in the middle of two new sweaters and a new pair of socks for myself, and a new fair isle glove design for my Mountain Woolies line that I sell.
• My love of the written word. It seems if I sit down for more than 2-3 minutes, I fall asleep. Hoping this will pass, I have started reading the next book on my 2019 reading list, and have my friend BJ as my reading inspiration! She is cranking through her booklist like a champ. I have perhaps 10 more books waiting on my list to be read by December 31.
• My goals of paying off my debt and buying myself some things I have needed for years. Well, I have a bit of medical bills now that I wasn’t expecting in January, but thanks to my saved up sick and annual leave (most park folks have no problem saving up leave because we are so short-handed that we never take leave), I was able to cover all of my absences for months with leave and I never missed a paycheck. So I was able to keep up with paying my pre-existing bills and that debt is declining as I’d hoped. The medical bills are on a payment plan and should be done in less than 13 months. Additionally, I have a couple new pieces of furniture for my apartment and I still get to take my vacation to New York that I hoped for back in January. Oh, and thanks to the weight loss, I got to buy some new clothes too. 😉

So suck on that, Cancer. You bit me, but I won.

No One Can See Me

The quiet was uncommon. Everything around me seemed darker than usual. My muscles grew tight from the cold.

I was used to swimming around our home with two hundred of my fellows, but today it seemed I was all alone.

The cold overwhelmed me. I began to lose consciousness. I could feel my body slowing, perhaps even sinking to the muddy lake floor. Maybe if I closed my eyes for just a minute I would feel better. The mud beneath me was warm and I rested my head as if to take a nap.

When I woke, it was pitch black. I was lying prone. The soft mud that had comforted me now felt hard and cold. Some amount of time had passed, but I was neither sleepy nor hungry. I felt intense pressure, as if every part of my body was being pushed from its current location inward towards my spine. I couldn’t catch my breath.

What? I must have fallen asleep again. The harsh vibrating must have roused me this time. The noise around me, not quite like a ringing in my ears but certainly as annoying, would not cease.

A thin shaft of light burst through, hitting me directly in my eye. If I could have moved, I would have flinched. Instead, stared straight ahead at that light. There was less pressure on my head now and the vibrating stopped momentarily. I was unable to tell my location but everything seemed foreign. For the first time in my memory, I was dry. And trapped. Was this what prison felt like? Except without being able to move even a muscle or blink an eye?

I tried not to sigh too loudly when the vibrating started again. No sooner had I talked myself into tolerance of this new normal, than I felt a sharp stab in my gut. Did anyone hear that scream? Whatever had caused light to shine in on my resting place was now breaking away whatever was pushing on my belly.

The stabbing in my belly would not stop. I couldn’t move out of the way and I couldn’t understand what was happening to me. My brain raced; fear petrified me.

More stabbing. More scraping.

The pressure finally subsided as whatever was constraining me was removed. I still couldn’t move or breathe, but at least the pain and pressure had subsided. This hairy giant looming over me, occasionally blocking that blessed shaft of light, was clearly not going to eat me. Apparently, I was being evaluated. Despite my stone-cold state, I tried to look my best. Whatever this being was, he was more intent on poking me with a sharp, pointed spear.

I suppose I passed whatever test this being was administering. The words, “Knightia eocaena” was scratched into the dried mud around me and I was placed in a clear box. Nearly every day, other such hairy giants would visit my box, their faces scrunched in though as they examined me.

---

Writer’s Digest publishes a writing prompt every week. The exercise given on June 25, 2019 was as follows:

Creative Writing Prompt: No One Can See Me
Re-write a scene or story from the point of view of someone or something that none of the characters knew was watching. It could be a ghost, animal, the furniture come to life, etc.

***

In my work at Fossil Butte National Monument, I see many species of fossils every day in our visitor center. This is one (fictional) perspective on how our mass die-off fossil panel came to be.

A Few Small Numbers

“It’s very, very hard to speak truth to power when the truth is unpleasant. I think it’s one of the toughest things, especially a young person has to do, when the only way you can do it is if you’re willing to walk out the door if he doesn’t take your advice, or you’re willing to walk out the door if he goes over the line.”

-David Gergen, White House Advisor (Nixon/Ford/Reagan/Clinton Administrations)

---

I’m trying to put words to paper here and I am just so lost. I don’t know what to say.

By now, many of you have probably read the Washington Post’s article about how President Trump took $2.5 million from the National Park Service, seemingly overnight, to help fund his July 4th event.

I am so conflicted. I was raised watching fireworks displays on the 4th, listing to music like the classic Sousa marches, and putting my right hand over my heart when the National Anthem played.

I am a public servant; I work for the federal government. This is my third administration to serve under.

But this week, I just want to sit and cry in embarrassment and shame.

Fee money in the National Park Service is so complicated. In fact, it actually takes special permission, in the form of actual laws, for the National Park Service (along with other bureaus from Interior and Agriculture) to even collect fees at all.  The current legislation is called the Federal Lands Recreation Enhancement Act (FLREA), and was originally enacted during fiscal year 2005 as part of Public Law 108-447. At the time, it was hoped that fees would help offset the growing backlog of maintenance projects in our parks.

Fourteen years later, constant budget cuts to the parks – along with a host of other problems too numerous to discuss today – have forced that backlog of maintenance projects to be valued at around $12 billion dollars. In 2019, the parks are begging to use FLREA funds just to hire a few extra staff members to meet the ballooning visitation; forget the maintenance projects.

Here’s where it gets personal for me: that $2.5 million? The NPS unit I work at is small, granted, but our net appropriation for fiscal year 2019?

$741,100.00

Mr. Trump stole MORE THAN THREE TIMES what my park is given to operate for AN ENTIRE YEAR.

I have that number memorized because I have to watch our budget every single day to make sure we’re on track and paying salaries and electric bills so we can keep the doors open to our visitor center.

My ‘park’ (in the NPS, we tend to refer to any unit as a park, even if it’s a monument or battlefield, or one of the 61 units that actually bears the title of ‘National Park’) is a National Monument, and we are one of just a handful of key paleontology sites protected in the U.S.

Like most NPS sites, we don’t actually collect entrance fees. Surprised? Most sites don’t collect fees. The big parks collect fees, some units collect monies from special use permits or attendance at specific programs, etc.

Small units like mine are required to apply for funding from FLREA for specific projects or programs. Think of it like writing a grant proposal. Congress gives us a small appropriation and anything we need beyond that we must apply for annually. During fiscal year 2019, I wrote one such project, requesting $6,000.00 to replace some of our aging IT infrastructure to meet current security standards. I am happy to report that my project proposal was accepted – but won’t be funded until fiscal year 2020. Don’t get me wrong; I’m happy that I can use our appropriations for staff salaries and utility bills, and that rather outdated server and network components can be replaced using project money.

But if Corporate America had to “make do” like the National Park Service does, I believe perspective among the 1% wouldn’t be such a foreign concept. So when Trump slapped us in the face this week, you bet I took it personally. It still stings.

Guns and the New American High

You know, I’ve had to think a lot about medicine and drugs lately.

About the middle of week four of my radiation treatment (my total treatment schedule took about 6.5 weeks), I started feeling the side effects of radiation. I’d lost my ability to taste and was back to a liquid diet, I was feeling worn out, and worst of all, I was starting to spend a bit of time every morning coughing up this bright yellow mucus.

During my weekly check up with my radiation oncologist (who was threatening me with a feeding tube if I lost any more weight), I said NO! I will not take any narcotic pain killers. I tried to remind her and her nurse that most narcotics make me feel even worse – often to the point of vomiting. I reminded her that I was allergic to codeine. Why would I take something that I KNEW would make me feel worse? Wasn’t I suffering enough? Besides, I didn’t want to end up as a statistic of the opioid crisis.

That’s when the oncologist laughed at me.

After a few more minutes of heated discussion, I won. I went to see a pain management doctor elsewhere in the hospital to discuss other non-narcotic options to help me get through the last couple of weeks of my treatment.

But the point was clear in my head: some doctors are really not afraid to dole out the meds. It is up to the patient to take control of their thoughts, pain and fears and do the right thing for themselves.

***

Fast forward to when the neuropathy in my mouth was a bit more controlled. I was able to think a lot more clearly and my daily tasks – including checking in with work – were sort of getting accomplished. I still slept a lot.

One evening, I happened to be part of a conversation around the dinner table. Really, I wasn’t participating. Just listening, since I was having some trouble speaking more than a couple of words without coughing. It didn’t matter, though, if I said anything or not – this was an old conversation that I’d had (or listened to) in many different places with many different people. Every single iteration focused on one of two scenarios, something like this:

Scenario #1:

Person 1: I have guns! I need my guns! I live (insert country metaphor as desired). I need to protect what I have! You understand Jen, you live in the same place as me!

Me: Um.

Person 1: Well, you lived in bear country, right?

Me: Yes, I’ve lived in rural areas of Alaska, Washington, Colorado and Wyoming.

Person 1: You need to protect yourself!

Me: From what? I’ve hiked in all of those places, by myself, for years. I know what to listen and watch for. I’ve come across bears, even when I’m hiking alone. (This is when I tell the story of the juvenile bear – probably out of the den and on his own for the first time that spring – that crossed the park road about 25 feet in front of me when I was hiking down the road from the rest stop to the Teklanika River early one spring before the Denali park road opened for the year. The bear stopped, I stopped, and we watched each other for a bit. I started talking to the bear and he walked off the opposite direction. I kept going the direction I was going and did not turn back to my car.)

Person 1: You weren’t scared? I would have sighted him. He wouldn’t have gotten me.

Me: Um. I’m still here. He didn’t even come near me.

Person 1: I would have shot first and asked questions later. I need to protect myself.

Me: The human voice is really a good weapon against wildlife. They hear us coming and often have moved in the other direction before we every knew they were that close to us. They don’t want to be around us.

Person 1: I don’t care. I will protect myself.

Me: Um, I think you’re missing my point. Let’s move on.

 

Or Scenario #2:

Person 1: I live in XYZ Big City! There are crazies everywhere! I have to have my concealed carry permit. I never leave the house without my gun!

Me: Ok. *shrugs*

Person 1: Don’t you ever worry about what people are going to do to you? You don’t live in a good part of town.

Me: Yeah, I’d love to live in a mansion with servants.

Person 1: I’m serious. My neighbors are awful. I had to call the cops the other night because they were making so much noise at midnight and I needed to sleep.

Me: You needed a gun to call the police?

Person 1: Of course not. You’re being to haughty. I need the gun to protect me and my home. People get robbed all the time.

Me: What does that have to do with noisy neighbors? Are you going to threaten them with your gun? My bike got stolen about 15 years ago.

Person 1: See? I’m not going to let anyone take anything from me!

Me: You think I chose to let that happen? It happened while I was asleep one night. They cut my bike lock off.

Person 1: I need to protect me and my family. You never know what people are going to do.

Me: I was asleep in my bed when the bike was cut from inside its lock. I don’t own a gun.

Person 1: I don’t know how you feel safe in your own apartment, alone, without protection.

Me: Ok. I don’t need a gun.

Person 1: How would you defend yourself?

Me: I’ve taken a couple of self-defense classes. But really, you’re more likely to get attacked by someone you know, in a domestic situation, than a total stranger on the street.

Person 1: *shakes his head* I’d at least keep a gun in my bedroom if I were you. Somebody is going to take advantage of you and your situation.

Me: Ok. I’ll let you know when that happens.

(I hate to stereotype, but I believe more men have said this to me than women. I have been in… um… domestic situations. It’s not fun. Without giving details, we’ll just say the powers around me prevented me from standing up for myself as I would have liked. But guns would not have helped.)

***

I have had these two conversations again and again with so many people in so many different places over the years. It took until my cancer treatment this spring, and my (forced) slower lifestyle, to concretely realize just how much of a high some people get off of fear. Forget the opioid crisis for a moment (yes, just only one moment); the new American High is fear.

Fear of the unknown. Fear of things beyond their control. Fear of things people TELL them to be afraid of (even if they haven’t actually experienced it and may never). My favorite is the fear that “they” (whoever “they” actually IS) are going to take away your lifestyle, particularly when talking about the gubment. (Read: government, although these types rarely pronounce the word fully.) Trump is making a LOT of money off this last one, shame on him.

Let’s see. I like to knit socks. So, since wooden knitting needles are such a hot commodity, my $8.00 set of bent needles that I’ve had for 17 years are the target of a thief? Or is s/he going to cut out the part of my brain that lets me think through my knitting patterns? Is THAT stealing my lifestyle?

Perhaps the example above is simplified, but I mean it when I ask: Do you want to live in fear? Do you already let fear control you?

Yes, there are bad people everywhere. Yes, a few people get injured every year by wildlife.

No, the government really doesn’t care how many non-reality shows you watch on TV. But you should. And you should probably stop that habit.

It is my theory that, if more people took a more proactive approach to their lives and lifestyles, knowledge and experience would drive out fear. But too many people are way too passive in their acquisition of knowledge and experience.

If you’re afraid of wildlife, get out and do some hiking. I’ll go with you. (Although my present physical state might limit the number of miles we cover.) If you actually see any type of omnivore or carnivore bigger than a marten or a fox, and other than human beings, I’ll buy you a beer.

If you’re afraid of the people around you, get to know them. I’d wager you’ll find they are more like you than you think – even if they don’t look like you or live like you.

If you’re afraid of some group or government entity stealing your lifestyle from you, I’d like to challenge you: start thinking about this… upon what is your lifestyle based? Material possessions? If you are speaking of religious affiliation, what politician is stopping you from going to church? Next time they block the doorway to your house of worship, take their picture and send it to me.

Even criminals who steal peoples’ identities generally do it digitally. How would a gun help with that? Are you being safe online?

Guns are not the answer.

“But I’m a hunter!” say some people. I know subsistence hunters. And I know Bubba Rednecks who claim the Second Amendment. They are generally two divergent groups, in my experience.

Like I said earlier today, you cannot prepare for every eventuality. But I am going to do my best to not let fear control me. My choices may take more work than some people’s, but no one can steal my knowledge of sock making.