Three Years…and Counting.

It was three years ago today that I got that phone call. I should have known it was bad news from the moment I heard my doctor’s voice, but it took me a few more seconds and that deep breath with which she began the conversation to know that my breast biopsy showed cancer. The journey began.

Now I am looking in the rear view mirror, back on a year-and-a-half of surgeries and treatment, of appointments, of body changes, hair loss and growth, of experience.
In that same mirror, I see the death of both of my parents, my daughter’s wedding, Lizi’s launching and the arrival of two more grandchildren (and one more coming soon.)

Three crazy years full of life.

I’ve recently noticed that I’m starting to look ahead. Tentatively.

During my “cancer year” I read a lot of cancer stories. Some were inspiring and encouraging; some were terrifying. The ones that bothered me most were the women who fought for years, the breast cancer survivors. I remember the story of a woman who battled cancer for twenty-five years. Oh dear God, please no. I started thinking that heaven was a much better alternative.

I did all the treatments as prescribed, giving it my best shot for that year and a half, but there was always a question in the back of my mind: What if it comes back? What if those positive lymph nodes (13/17) or the scary staging (IIIc) meant I was doomed?

I didn’t talk about it much and I really don’t focus on it either. “It” is just always there, that big IF about my future. Every ache and pain–and there have been plenty–makes me wonder if it’s just an ache and pain or if it’s a harbinger of worse to come. Every plan formulating in my mind gives me cause to wonder if I will get to see it played out.

But lately, I’ve felt a shift in my thinking. I don’t want to live forever and I still don’t want to get really old but I still have some dreams, some projects, some life to live.

And at three years–and counting–I’m beginning to hope that I might just get to do it.

End of the line.

This Thursday, my port is coming out! This is the very last procedure/surgery on my cancer journey, the end of the line on a trip I never wanted to take. It also marks my two year anniversary since diagnosis.

I’m pleased to reach this milestone and even happier to get rid of the funny bump by my collarbone. But even more, it feels symbolic–as if to say I’m done being a cancer patient, done with chemo forever. Two years out isn’t enough to be so sure about that, but getting the port out at least kind of stakes my claim in the territory. I am so done with cancer treatment (except for my nightly white Tamoxifen pill.)

I’m sad that my Dad isn’t here to share this milestone with me. He was so supportive of my throughout my cancer journey, from the very first Valentine’s card a few days after my diagnosis through many prayers and phone calls. He asked a lot of questions and was always concerned about how I was doing. He was waiting by the phone after every procedure or surgery, anxious to hear that all was well. I know he would be thrilled by this, but also that he would full of gratitude: “God is gracious. God is good.”

I think I will learn from my Dad and frame this event with gratitude: I am thankful for successful treatment, for a reasonably easy process, for good doctors, and for family and friends that have encouraged and helped me through it all. God is, indeed, gracious. He is good.

 

 

 

 

Numb

I have three areas of my body that are numb.

My left ear is still numb from the parotid surgery (November 2013) though I can think I sense feeling coming back. My right chest area, side and part of my back are also numb from the mastectomy and axillary dissection (February 2013.)

Most of the time, I don’t even realize that they are numb. In fact, lately I’ve found that if I lightly scrape the skin on my cheek with a fingernail, new sensation prickles. I don’t even know how to describe it but I think the nerves are reconnecting and I can feel more and more of my ear as time goes on. It is weird to realize that I still don’t have much feeling on my chest or side, that there are areas of my back that simply don’t register sensation. I can feel pressure but not normal sensation. I guess you get used to numbness and it becomes your new normal. As sensation returns, it is surprising and well, a little odd.

I think that my heart is also numb, and that is my new normal for now. Most of the time I go on with normal life and don’t feel a great deal of sadness or grief. Every once in a while a fingernail scrapes across my heart and I am surprised to remember, to feel odd sensations that I can’t quite identify.

I’m a little puzzled by this. It doesn’t seem right that the waters should be so calm, like the surface of the ocean simply rolled over the spot where a ship went down and now everything looks peaceful and normal–but it is not. I’m surprised at how life (and everyone around me) has moved on, that barely a ripple remains on the surface.

I can’t manufacture emotions so I’m just taking a day at a time, doing the next thing, and trying to give myself space to heal. I’m trying to avoid being too busy and letting life come, as it does, in seasons that are varied, in changing patterns. Just as I’ve learned to live with numb body parts, I am learning–I guess– to live with this process of strange grief.

Family Stories

My vacation is over. I go back to work today.

I saw my doctor on Tuesday and was given the go-ahead to resume normal activities, except for lifting anything over 5 lbs for the next four weeks and remaining “cautious.” In light of that, I will work as a triage nurse for the next two weeks, sitting at a computer and answering the phone. It is not my favorite job at work, but it seems the most reasonable for the circumstances. I much prefer interacting face to face with patients.

I completed a few sewing and knitting projects (small ones) and read and rested as much as I was able. I admit to breaking curfew last Saturday to go to the All Blacks vs USA Rugby game at Soldier Field, but really, except for climbing those stairs to our seats up top, all I did was sit and watch New Zealand smash the US team 🙂

The NaNo — 

There is a yearly competition every November called NaNoWriMo (perhaps you’ve heard of it). If you manage to type over 50,000 words in one month (no matter what month though) without breaking your streak you will be awarded this fine badge of honor.

I also got a head start on my November writing. For the past three years, I’ve participated in the NaNo challenge to complete 50,000 words, the size of an average novel. (November is National Novel Writers Month.) I combine writing with genealogy each November, working on fictionalized family stories.

In the past, I’ve mostly focused on my Dad’s side of the family, but after researching my Mom’s Swedish-American side last spring, I wanted to work with that for at least part of the month.

In both cases, I’ve found that the 1910 census was a good starting point for my stories. I’ve learned more about the census, the enumerators, and the process. In each case, I found a name for the actual enumerator, found them in the census records and imagined a back story.

Willis C. Stone knocked on the door of a boarding house in Chicago on April 24, 1910 and found, among others, two young Scottish immigrants who were studying business. The older was quiet and shy; the younger, outgoing and friendly. Little did he know that both men would become part of our family story. A few years later the younger man, Robert Marshall, married my grandmother. He did well in business and by 1925 had acquired a summer home and a Monroe touring car with a winter top. His wife and three children–with one more on the way–were spending their first summer there and he was commuting back and forth to work. On a Tuesday evening, driving south on Hwy 41 near Hammond, he came to an intersection of the highway and the Pennsylvania Line train tracks. A car was stopped at the intersection but Bob swung around the car and crossed the tracks, right in the path of an oncoming passenger train. My dad was born four months later.

Thirteen years later, my grandmother went to Kalamazoo, Michigan, and married Laurence Christie, the older of the two young men listed in that 1910 Census. Robert and Laurence had remained family friends for all those years, even assisting one another in a business venture. Laurence, who had never married, stayed in contact with his friend’s family and later, convinced Janet to marry him. He died seven years later and I’d never paid much attention to him until a couple years ago when I learned a lot of interesting things about him and his family in the Shetland Islands. (Including the fascinating story of an older brother with bipolar disorder and unique artistic talents. During the last year, several memorials have been dedicated to his memory in Scotland and in the Shetland Islands.)

Back to 1910: About a week later, Ida Hanson visited two homes on 47th Street on the north side of Chicago. In one, Millard and Carrie Hansen lived with their three grown children, Nellie, Lillie and Ralph. Next door, Carl and Alma Freeberg lived with Albert, Axel, Arthur and Andrew (Alma’s father.) A young girl, Ellen Linden (13) is also listed as a lodger. Orphaned two years previously, she and her sisters had gone to live with different families in the area. I am entertaining the possibility (suggested by an old friend of the family) that Ellen first lived with the Hansens, who later encouraged Alma to take her in. In fact, twenty years earlier, in the 1880 Census, I found Alma Peterson living with the Hansens as a boarder. I am inclined to believe that it was Carrie Hansen who urged Carl Freeberg to hire Alma as his housekeeper after his young wife and daughter died, which eventually led to one of his son’s suggesting that Carl marry Alma. Perhaps the Hansens played a similar role in prompting the Freebergs to share their home with Ellen. In 1919, Ellen married one of the Freeberg boys, my grandfather Art, becoming my grandmother in the process. The Hansens remained close to my grandparents. In fact, I am pretty sure that the Haviland China that I inherited from my grandmother first belonged to “Aunt Lillie.”

I still want to walk around the neighborhood and continue my research to see what more I can learn. I love the meat-on-the-bones stories that come from probing deeper. (Even if they can’t be entirely proven as true.)

So, while I continue the next phase of my recovery, I will be continuing my research and writing a LOT of words. Between work and home, that’s a lot of computer time.

But I’m having fun–and resting.

Achieving Symmetry

I got a huge kick out of reading my primary care doctor’s notes about my surgical plans. I quote: “…awaits left breast reduction to achieve symmetry.” I really liked that.

The surgery went well and I’m a bit more symmetrical.

The recovery period is just what my doctor predicted: I feel fine for the most part and have to constantly remind myself to rest and limit my range of motion. I’m a little tender and itchy, but not experiencing pain, fatigue, or much else.

The quiet week has given me a chance to think about symmetry in other areas of life. Another word for it might be balance.

One of my quiet projects has been to re-read Simplify and try to take some of the “Action Steps” that he outlines. I’ve also edited–and burned–a few of my old journals, starting to cull out some of the “stuff” that keeps life from being simple, both physically and emotionally.

I’ve always said that you either have time or money, but never both. Maybe as you get older, it becomes more of a balancing act between time and agility/ability/freedom from restrictions. I have all this time on my hands, knowing that if I rest well, the outcomes will be better.

So, I’m reading, writing, knitting, hand sewing, and editing old journals. I’ve called a few friends and taken a couple of short walks. I’ve obeyed the driving restriction, so I’ve stayed pretty close to home. (A couple friends have taken me out for lunch or breakfast.)  When the sun was shining, I rested in the hammock in the my back room, and on colder nights I sat in front of the fire.

On Tuesday I go back to see the doctor, and see what he has to say about returning to work, etc. I know there will continue to be some lifting restrictions so I’m planning on a balanced life throughout November.

If only symmetry were as easy as this.

 

A Different Sort of Anchor

I am counting down the days and checking things off my list before surgery on Thursday. Except for the removal of my port (2 years post-diagnosis) this will be my final surgery of this saga. It is a completely optional surgery so I’m feeling a little weird about it.  I never thought I’d actually have “plastic surgery”–but then, I never planned on a mastectomy either.

imagesI won’t say much about the upcoming surgery except this: The surgical cuts are done in the shape of an anchor. I’m finding that really interesting since an anchor has become the symbol for hope. You know those necklaces or charms that represent faith, hope and love? A cross, an anchor and a heart. I’m just finding it interesting after thinking about hope for a few months that I will have an anchor-shaped scar.

So, here is what I am hoping for:

A quick and easy recovery. (The doc says I will actually feel “too good” and will be tempted to do too much. I’m hoping he is correct. I think I can handle that kind of temptation. I.e. rest well for the 2 weeks following surgery. No picking up Oaks, though.)

Continued health–and several more cancer-free years. In deciding whether or not to do this surgery, the big question mark for me has been whether it is worth it. If only someone could let me know the future. John and I have had some experience with spending money on car repairs right before the car completely breaks down. I hate the thought of expending time and money on this surgery without a guarantee of future health. (Unfortunately no one can predict the future. However at my oncology appointment earlier this month, it was nice to have the doctor come in and enjoy seeing a “healthy patient.”)

Some nice quiet days at home. I have taken the next 10 days off from work. I am really looking forward to staying home and relaxing. I hope I feel good enough to read and write and maybe do a little sewing and some genealogy. The last few months have felt fast-paced and I’m anticipating a chance to slow down, even if just for a bit.

images-1What’s next?

Maybe a tattoo?

 

 

 

 

 

Faith…and a few other things.

Faith is being sure of what we hope for and certain of what we do not see. I still have a teeny, tiny bit of hope, but no faith with regards to #thehobbitfancontest (which is probably a good idea.) After almost two weeks, Warner Bros finally put out a notice that they were still contacting/finalizing winners and would reveal the winners by the end of the month. That’s kind of interesting because those winners will need to be ready to board a plane just about then. I’m pretty sure that I didn’t win, but I would still like to see a report of actual people who did win. Somehow I’m feeling like this whole thing could be a hoax. Maybe that’s just sour grapes, but how hard can it be to finalize 12 winners from the United States out of more than 500 who are all dying to be chosen?

In the meantime, today is the last day of my 40 Day Jumpstart on The Daniel Plan. On September 1st, I started reading the book and implementing some of its ideas. I started by cutting out the obvious desserts, sugar, and my daily Refresher, and then fine-tuned the whole process as the month went on. Around Day 9 or 10, I started a 10-day detox of no dairy, no gluten, no caffeine, no sugar and no preservatives.

At the same time, I was reading–and enjoying–that book that I won: Bill Hybel’s Simplify. I read most books quickly the first time, and then read them again if they seem worthwhile. This book definitely deserves a re-read and maybe even a chapter-by-chapter study. Hybel’s calls believers of all ages to slow down and evaluate the crazy pace of our lives, making thoughtful decisions about the way we invest our time, energy, money, work, and relationships. We really can’t do it all and we need to take time to redirect our lives in order to make the most of our resources. Now that life has speeded back up to “normal” this is a message I need to hear and follow.

I’ve also been reading about food. Besides The Daniel Plan, I’ve read The Third Plate (Dan Barber) and I’m currently reading Michael Pollen’s Cooking. It’s pretty interesting to note the trends in eating, food and cooking that have occurred during my lifetime. I remember being taught in nursing school that if you ate a well-balanced diet, you didn’t need vitamins and supplements. That was probably true in the 50s and 60s, but over the past 40 years our food, our eating habits, and our “cooking” has changed so much that unless you choose wisely (and keep yourself somewhat educated) you probably aren’t getting all that you need from your diet.

As someone who just spent a year of my life fighting a hormone-receptor positive cancer, I’m pretty leery of eating meat that comes from animals pumped full of hormones and antibiotics and fattened for market as quickly as possible. We’ve gradually been moving in this direction, but now I’m starting to look at my food as “medicine” as well as fuel. We Americans have spent millions of dollars on healthcare for diseases that have been largely caused by our diets. (In my case, nearly $100K has already been handed over by my insurance company.) Maybe less convenience and better food isn’t too big a price to pay for better health. My plan is to eat less but better meat. And to bite the bullet and cook more. I’d love to grow more food too, but I’m not sure I’m quite that industrious.

The bottom line of The Daniel Plan is to eat real food that is grown as close to home as possible. It is not just about food though, as it is a plan to have a healthy lifestyle that balances faith, food, fitness, focus and friends. The message Saddleback Church has offered fits fairly well with Hybel’s Simplicity. Both books have been enhanced by the larger message of The Third Plate and Cooking.

In the last 40 days, I’ve lost about six pounds but more importantly, have broken some of my junk food habits. After several months of daily Refreshers from Starbucks, I treated myself to one yesterday on my birthday and realized that it didn’t do that much for me. I’ve actually learned to drink water. (Just think of the $$ savings right there.) I can pass up most desserts and bread (except in Italian restaurants.) I’ve figured out that I am not gluten or lactose intolerant, so I can probably still enjoy cheese and whole wheat, maybe just less of it. I’m still trying to figure out fitness, especially as the temperatures drop. I love walking but only in sunshine. I have considered a goal of actually running again–a 5K at next years Run for Hunger–but I haven’t committed to it yet. That life verse–Isaiah 40:31–is supposed to be a challenge/promise to me on that score. Could I really “run and not be weary?”

I have hope, but not faith 🙂 on that one.

 

 

 

 

 

 

 

The Next Thing

Years ago, I heard Elisabeth Elliot talk about a good way to get through overwhelming times–as well as everyday life. Her prescription was simple: Just “do the next thing.” 

It’s been how I’ve been living my life for the last several weeks:

Stormy Lake. Check.
Lizi’s Housewarming Party. Check.
Work. Check. Check. Check.

It didn’t feel right. I felt like I was in a big race, but not sure where I was/am headed. I kept thinking of that long list of things I wanted to be doing and felt frustrated.

But maybe Elliot was right. Maybe all I need to do is focus on that next thing on my calendar or “to do” list, and be satisfied with that. Maybe getting through this busy season is all I have to do, all I ought to be doing.

There are several “next things” in my life that are coming up:

1) I’m looking forward to a week in Michigan, September 20-27. Our church is doing a domestic mission trip in Detroit. When I first heard the location, I thought I should sign up since I grew up just outside the city. I am going to go early and stay with my dad during the week and travel to the work site every morning. I’m looking forward to both parts of the trip–a longer period of time with my Dad and working with this team of hard working, compassionate folks from my church.

2) Before the trip, I have a day of appointments at Rush: a follow-up mammogram and a visit to the ENT surgeon. Early in October I spend another day or two re-visiting my other two surgeons for follow up and a pre-operative check. I think there are a few more appointments that I need to complete in order to stay on top of all the post-cancer treatment. It’s been nice to have the summer off from medical appointments.

3) I am tentatively planning to do the last part of my reconstruction on October 21, not yet sure what that will involve, especially in terms of recovery. I have the following ten days off and then will likely work triage for several weeks.

4) And then, the holidays will be pressing upon me.

Just. Do. The. Next. Thing.

P.S. I picked a Life verse (or at least one for this season of life) and it seems particularly appropriate in light of what lies ahead. Also note the word “hope” (KJV) rather than the usual “wait” in this familiar verse:

He gives strength to the weary and increases the power of the weak.

Even youths grow tired and wear and young men stumble and fall,

but those who hope in the Lord will renew their strength.

They will soar on wings like eagles;

they will run and not be weary;

they will walk and not faint.

Isaiah 40:30-31.

Hope and Cancer

Today is my one year anniversary from the end of chemotherapy. I only remembered because I was thinking about my hair this morning in the shower. Laura took a picture of me (with Oaks) yesterday and I was surprised, again, at how little shows up in a straight on photograph. It’s not that it looks thin or wispy, just that not much of it shows up that way. If you do a back view, it’s much easier to see how much wild hair there is. It still drives me a bit crazy, in that growing-out-in-between stage, but I am grateful for the color, the curls, and the convenience for now. Shampoo, product, finger comb, done.

I also am grateful for how well I feel, which is to say, pretty normal. I never really experienced radiation fatigue (a blessing) and my energy levels feel pretty much back to normal. I’m working three days a week, enjoying my grandsons, taking short trips, keeping up (mostly) with the yard and (a little less so) with the house. I’d like someone to throw an extra day into each week because every one of them seems to fly by, but overall, life is good.

More than a few of my projects have been derailed this summer. I still haven’t made it to Chicago for my Swedish genealogy. I finally started a quilt for Lizi’s new apartment and still haven’t figured out Oaks’ birth quilt. Anne & James’ wedding quilt top is done, but no further towards completion. My upstairs “sanctuary” is still an unorganized work-in-progress and I never got started on my plans to paint the back “sun” room. I also never got back to the Wellness Center after three or four exercise classes in May or June.

1907806_644496532815_5177578116276566678_n photo 1photo 3

 

 

 

 

 

(The World’s Shortest Doctor; Oaks & Gramma; Photo Booth Silliness)

Last summer cancer put the rest of my life on hold and this summer it feels like the rest of my life put the cancer on hold. Last summer was slow and listless; this summer was quick and quirky. I think it mostly had to do with the Epic learning curve at work–long days of intense concentration. A new baby in the family and an active, fun 3-1/2 year old (and a tired mama) have added to the mix, as well as Lizi’s move, and Johnny’s hockey schedule. Cancer has danced around at the back of my mind, but hasn’t been allowed much more than that. I guess that is a good thing.

Hope and cancer? I just hope it goes away and never comes back. For me, and for so many others out there struggling with the whole process.  For now, I like the words of Psalms 27:13 and 116:9–

The Lord is my light and my salvation, whom shall I fear? The Lord is the stronghold of my life, of whom shall I be afraid?…

I am still confident of this–

I will see the goodness of the Lord in the land of the living. Wait for the Lord;

be strong and take heart and wait for the Lord.

 

Be at rest once more, O my soul,

for the Lord has been good to you.

For you, O Lord, have delivered my soul from death, my eyes from tears, my feet from stumbling.

that I may walk before the Lord in the land of the living.

 

 

Taming of the “Do”

I really don’t mean to complain. I am grateful for the full head of hair that has grown back in the 11 months since chemo ended. It’s just that it’s a little crazy. I love the feel of the curls but as the day wears on, I start growing wings that don’t want to be tamed. Overnight it gets really wild. I like it best just out of the shower with a little “product” applied. (Best case scenario: a hot day spent in and out of the pool rearranging my hair with water every hour or so. Unfortunately, there haven’t been too many of those this summer. ) It’s at that in-between stage, but I really do want to grow it out and I have to put up with this to do so.

photo 4-1photo 3photo 2-2

 

 

 

 

 

Life at work and home feels a little unruly as well. I’m working three days a week with a few fun days but no real vacation. Work is generally more stressful than usual as we continue to learn our way around the new electronic medical record system.

photo-2I have been sorting through storage boxes and old journals. This month I consolidated five years’ worth of journal cards that I wrote between 1985-1990. The next year I started writing book-journals and have so far found 42 of them, not including the 22 kids’ journals. (John-10 books, Laura–6, Lizi–4, Anne–2?) Some days I feel like I’m drowning in words

And then there is yard work. I am enjoying my gardens. One in front, two in back plus a raised bed vegetable garden, and the side garden, which this year has become a flower/color garden after a few very scraggly years. (The idea was to grow dyeing plants, though I’m not sure I’ll do much dyeing this year.) We had to paint over the flower mural we had on our garage because the sealer yellowed and peeled, pretty much ruining Amanda’s work of art. The grass is still basically a manicured weed field–I’m getting close to giving in and using chemicals on my lawn.

Lizi and her friend Siobhan (and me, technically) signed a lease on an apartment this month. They will be living in a 1-bedroom apartment about a mile from home starting August 1st. (The housewarming party is already scheduled for September 6.) This is an adventure for all of us, one we are anticipating with a little fear and trembling. We think Lizi will do just fine, but there have been (and will be) a few challenges along the way.

I’m looking forward to making Lizi’s room at home into a guest room and sanctuary. I’ll have my own bathroom and closet for the first time in something like 30 years and room to spread out a little bit more than usual. I want to use the space to continue organizing, packing and downsizing–not accumulating more stuff.

In general, life feels–like my hair–untamed and a little overwhelming. I’m not sure what is causing this. It may be a normal post-treatment phase. Or it could be a result of the goals I’ve set for myself this summer. Or it may come from the vague sense that I’m waiting for the other “shoe” to drop (in more areas than just the cancer.) Or, maybe I just need a vacation.

Three words from the book of Hebrews encourage me: Rest, grace, and hope. “Since the promise of rest still stands, let us be careful that none of you fall short of it…make every effort to enter that rest…Let us then approach the throne of grace with confidence, so that we might receive mercy and find grace to help us in our time of need…We have this hope as an anchor for the soul firm and secure” (Hebrews 4:1, 11, and 6:19.)