NaNo

I finished writing over 50,000 words this month to earn my second NaNo badge on 750 Words, a site I have used for daily writing since June 2012 (and love.) November is National Novel Writers’ Month and so the last two years I’ve taken on the challenge of writing 50K words and attempting to work on a fictionalized story about my Gramma Christie’s life.

Last year I wrote a Prologue and a few sketches. I also did a lot of research on her second husband, Laurence Christie. When I started we knew very little about him except that he had come from the Shetland Islands, shared the same boarding house with my grandmother’s first husband, worked in the commercial real estate sector (pre- and post-depression), married my grandmother in his 50s, and died seven years later of a bleeding gastric ulcer.

I found his family in Cunningsburgh, Shetland, learning that his older brother suffered from bipolar disorder but was a talented musician, writer, and stone carver. Laurence emigrated to Chicago in 1907, where he worked hard enabling him to send money home to help his family and also likely helped a sister-in-law and nephew come to the States. He met Bob Marshall by 1910, when they shared the same boarding house (and were entered on the US Census on consecutive lines.) Robert Marshall died tragically in 1925, hit by a train as he was commuting to the family’s new summer home in Cedar Lake, Indiana. My grandmother was expecting my father at the time. Thirteen years later, Laurence married my grandmother.

I have enjoyed being in contact with Pat Christie, a native Shetlander and family historian. Her husband is the grandson of the son that stayed on the croft and took care of his and Laurence’s aging parents. She has sent me pictures and letters and answered a lot of my questions. We’ve shared our genealogical discoveries and information.

This November I tried hard to understand the times and context of their lives and wrote a lot of what I call sketches. I would take an event that I knew had occurred and write about it from that person’s imaginary perspective, adding details to the story that I thought were reasonable: what it must have been like for fourteen year old Laurence the night his older brother was taken away to an asylum; my grandmother’s thoughts when two men knocked on the door of her summer cottage to tell her that Robert had been killed by a train; Laurence’s thoughts on his long wait to marry; and so on.

I’ve been pretty focused on stories. I’ve journaled for years but when you stop writing the facts or even feelings about what happened, when you start telling stories, something different happens. I’ve found it really fun.

Recently I read a memoir (Global Mom Melissa Dalton-Bradford.) After sharing her story, she wrote:

“The story we’re writing with our brief lives can never be told in its entirety, neither its length nor its fragility nor its density. By that I mean that we’re all born into the middle of a perpetual narrative, and our simple strand of personal story does not begin when our life does. In view of that, whenever we leave this place–be it at eighteen or eighty–we are always, inevitably leaving in the middle of the story. That singular tale is woven in multiples of others, so our leaving will be in the middle of others’ tales. Our stories go on. We go on. We are always in the middle of the Great, Infinite Story” (pg 292.)

Working on my grandmother’s story while battling cancer and dealing with my parents’ declining health, has made me very aware of the interconnectedness of our stories. At the same time, my son and daughters are in the midst of their stories of disability; miscarriage and new life; travel, romance and wedding plans. There was no great parentheses around any portion of this last year, no time when our stories didn’t affect others’ stories.*

I best remember by grandmother in her early 90s, bed-bound and unable to see well enough to read anymore, telling me that God was good to keep her hearing intact. Earlier in her life, she chided two of my cousins for their assessment of the “tragedy” of her earlier life saying “There are no tragedies in life.” My grandmother wasn’t in denial: she simply believed that God was sovereign and that He was good. Today my Dad prays “God, You are good, You are kind. Thank you.” And then he tells me that “God is in control,” even when he struggles to believe it.

I am in the middle of so many stories and I’ll bet you are too. Let’s share our stories and keep reminding one another that God is good, that it is–in the end–God’s great infinite story that we all get to share.

 

* I googled affect vs effect, but I’m still not sure if I used the right one. What do you think? I also know that I don’t technically spell “Gramma” correctly, but it’s the way I’ve always spelled it and I have emotional connections to my spelling, so I will continue. Just saying.

Head-to-toe

Today is November 22nd and my priority today is to take pictures and post a blog. It has been three months since I completed chemotherapy, three weeks since I finished radiation, and about 10 days since the parotid tumor was removed. Here is my head-to-toe review of systems:

photoKewpie doll or Mini Mohawk? My hair is continuing to grow and thicken and I am loving it. If you’re as old as me you might remember the Kewpie doll look. If not, imagine a mini mohawk. The hair at the very peak of my head seems to be a little longer than the rest and mostly standing straight on end. It is still very very soft. Lots of friends have enjoyed rubbing my head of late and I’m not one bit offended. I like to rub it too.

Top and Back Views:

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unnamedI’ve started spending more and more time in public without fake hair. I often wear my halo wig/Allie McGraw cap outdoors but the hair and the hat come off pretty quickly once I’m indoors. At first I needed the hat for warmth and then I needed the hair to cover my scar. I solved that problem by purchasing my new winter hat which can handle both problems at once and is easier to manage. Plus I kind of like the braids.

photo 2I got my stitches out this morning and the doc was happy with my progress. The ear is slightly swollen and numb to touch. I’ve also noticed that I can’t eat dry food on that side of my mouth without a glass of juice in hand. The parotid is a major salivary gland and for now I’m short on saliva. That and the numbness should gradually get better. I’m smiling and that is really all that matters. Oh, and the fact the tumor proved to be a benign pleomorphic adenoma, completely harmless.

Further south, my skin has healed quite nicely from the radiation. The redness is completely gone, most of the peeling has ceased, and there are just a few dark areas left. No itching or tenderness. On Monday I will see the plastic surgeon to see if I can begin filling the expander again.

And last of all, my feet (toes) are numb and tingly most evenings and sometimes during the day. I can’t figure out a rhyme or reason to it yet. I know it is a form of peripheral neuropathy from the Taxol (remember Taxol Toes?) but not sure if it is getting any better or worse. Mostly it is just annoying.

My Mom spent most of this week in the hospital. She was feeling quite good on Monday when she had a blood test done and a follow up visit with her doctor. The test revealed an extremely low hemoglobin (6.0) so the doc sent her to the hospital for a transfusion and dialysis. An overnight stay turned into a lot more tests and unpleasant experiences, but things seem to be back on track. She will return home on Saturday.

Her week seems like my year! I started 2013 feeling just fine and now I have this butch haircut, a cauliflower ear, a plastic pouch in place of my breast, and twinkle toes. But I’m still smiling.

 

Do Your Ears Hang Low?

Do your ears hang low? Do they wobble to and fro? Can you throw them o’er your back? Can you tie them in a bow? Can you throw them o’er your shoulder like a Continental soldier? Do you ears hang low?

My daughters have the cutest little ears that they didn’t get from me. I never cared at all about the size of my ears until I lost my hair. They’d always looked okay surrounded by a lot of hair. Now, I’m wishing I had cute little ears. My ears hang low.

And what’s worse, is that there is was a parotid tumor just below and slightly back from the left ear lobe. People kept wondering why I didn’t wear earrings with my bald look. It was at least partly because it seemed to draw attention to the lump behind my ear.

I actually noticed the lump about three years ago. I went to see an ENT doctor who did a fine needle biopsy in his office. It came back benign, a pleomorphic adenoma. He wanted to take it out, but I decided to wait awhile because I knew that an important facial nerve runs through that area. I consulted with my regular doctor and his research showed that they could turn into cancer but usually don’t for 10-15 years. I decided to hang onto my smile for a few more years (until Anne got married) and take the risk.

When I was diagnosed with breast cancer last winter, one of my first questions was whether it was time to deal with the parotid. Dr. O’Rourke thought it could wait. When it came up with my breast surgeon, he listened to my reasoning but thought I should get it out sooner rather than later. He told me that he used to do the surgery and that it could be done without facial nerve damage. After surgery and the first few chemo treatments, my oncologist also encouraged me to get it out. Both of them recommended the same doctor at Rush, so I went to see him in September.

Dr. Nielson says there is only a 1% chance of permanent facial nerve damage and that he has only had such case in his entire career. He also wanted to get it out sooner rather than later, recommending that I not put it off for another year. He says that the position of it is better than average (Slightly back from my ear. Many parotid tumors are further forward.)

So, I decided to go ahead and get it done in November. I figured I’d be needing extra rest from radiation fatigue so I might as well be recovering from surgery at the same time. Post radiation and still a couple weeks before Thanksgiving and the rest of the holidays. (I called him back and asked for an estimate for short term recovery and he said I’ll look good in the Christmas pictures. I hope his word is good.)

A part of me is was terrified by this surgery but after all I’ve been through, the larger part of me is accepting that it needs to be done and trusting in the skill of my doctors and the will of my Father. I’m not going to worry about the “what ifs”. A lopsided smile seems too cruel at this point in my life, so I’m just going to assume that it isn’t going to happen. If it does, I guess I’ll deal with it then. (Good strategy!)

Post Script (quite literally): This was written about two weeks ago with plans to post it last week before my surgery. I was just working on embedding the video into the post when my domain apparently expired. So no blog for the last five days. I found I really missed being able to communicate my need for prayer, but fortunately, Facebook worked as a decent alternative.

The surgery went well. My smile is intact, I can blink my eye and scrunch my face. The recovery period was a little rough the following night and day, but I truly was so relieved and happy about my smile that a little nausea and vomiting seemed like a small price to pay. I stayed an extra 36 hours and came home this morning.

Before and after pictures (warning: second picture may be too graphic! (But look at all that hair 🙂

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I hear the fat lady singing!

What a full, happy day.

The day began early. I started work at 8 a.m. and left again by 10 for my last radiation treatment. I stopped to pick up a box of chocolates for the techs. The treatment was short and sweet and the congratulations warm and happy. photo 3My next stop was an appointment at Rush with one of the surgeons (more about that in my next blog.) I met Laura, Kellen, Liz and John for a quick and happy lunch near the hospital and then returned to Elmhurst to go back to work. Enroute, I stopped at Starbucks and picked up 24 pink cake pops and handed them out at work like cigars. (A ridiculous splurge, but hey.)

I cried twice, but they were truly tears of joy. As I laid on the “rack” that one last time, all alone for a brief moment, I couldn’t help but start to think of all I’d been through to get to this point. And on the way back to Elmhurst I turned on the radio and the first line I heard was “You were meant for so much more than this.” It was like someone just turned on the faucet. The phrase filled me with hope for the future.

Of course, only a few songs later, I heard “All I know is I’m not home yet. This is not where I belong.” I laughed and thought maybe I didn’t want to put too much store in the coincidence of song phrases on the radio. (Kind of like looking for the Lord’s Will by randomly opening your Bible and placing your finger on a verse.)

But that does bring up an important point that is coming up more and more in conversations, and did, in fact, come up more than once today. The triple whammy of breast cancer treatment, mastectomy, chemo and radiation, is over. People want to know when I get to find out that it has all “worked.” The answer is never. There is no point where anyone declares me cured. We just wait and watch and see. There are formulae for guessing the risk of recurrence but no one really knows.

BTW, after Laura and Kellen finished praying for “Gramma Christie” to get all better, Kellen told his mom that he didn’t want me to get all better because he liked me being bald. Sorry, Kellen.

photo 2-2They even gave me a diploma! Someday I’m going to write a book about graduations I never wanted to attend. (For example, Johnny’s MICAP graduation.) I’m thinking of displaying some of these certificates on a wall in the basement.

 

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The evening was topped off by a fun, hour-long Skype session with Anne and this picture of my completed birthday present from Johnny, his first carved masterpiece. I also enjoyed the Facebook Likes and Comments of friends and family sharing my joy.

Tomorrow morning I fly to Detroit to share in another small celebration as my Mom leaves the rehab facility and returns home.

There is still plenty of tough stuff ahead, for me and for my folks. The major treatment phase is over but I’m not really done. Still, I hear the fat lady singing and it sounds pretty good tonight.

 

Not by the hair of my chin-y chin chin.

Today a friend took me out for lunch and a manicure, so while I was at it, I had my eyebrows waxed. And while I was at that, I had my chin and part of my face waxed too. Downy blonde hair has been appearing there too! Weird.

Five radiation treatments to go. My skin is red and tender and each treatment seems to make it a little worse. Now I have four creams to slather on. But every day gets me closer to the end of my treatment. I am definitely counting down.

I saw my radiation oncologist today and he says that once I finish my treatment next Monday, I am free to do as I please, without restrictions. I specifically asked if I could leave for Detroit the next day to help out with my parents. Mom is doing fairly well, anxious to return home, but my Dad’s congestive heart failure seems to be worsening and he is concerned about being able to care for her. I’d really like to be with them to help smooth the transition. (I’m planning to take the train to conserve my energy and to take naps whenever they do.)

For now, I’m trying to rest up as much as I can. It’s a slow work week for me, which is good. I’ve had a bit of fun making Kellen a Peter Pan outfit for Halloween and would like to get some longarm quilting done, but I’m really trying to pace myself and stay healthy. The hammock in the back room is a good place to relax, especially when the sun shines.

The big bad wolf seems to be huffing and puffing and planning to blow the house down but I think the foundations are strong and secure, foundations that my parents laid many years ago, that have been strengthened in recent months by your prayers.

Not by the hair of my chin-y chin chin!

 

 

 

 

 

Hair!

photo 2I’m loving my new hair. It is so soft–like a baby’s–and seems to be growing every day. Truthfully, there still isn’t enough avoid the “bald” or “cancer survivor” look–it’s just a bit more than a 5 o’clock shadow– but it’s enough to make me grin every time I look in the mirror. Or every time I happen to rub my head (which is often.)

 

photo 2-1I’m also growing Groucho Marx eyebrows, which make me laugh even harder. About a week ago I noticed the same “shadow” effect above my eyes, and saw a wide swath of dark emerging. I know it won’t be long before I run to the get them waxed into a better shape, but right now I’m finding them quite humorous. I’d like to see how bushy they can get.

And I have teeny, tiny little eyelashes growing in. I didn’t lose my last long eyelash until these started growing, so it worked out pretty well. I’d stopped using mascara about 1 month ago because there were so few left that it only accented the missing ones. Now I have a tight row of 0.5 cm lashes growing, barely enough to see. I’ve heard that they grow straight down and don’t curl for awhile so I may be digging out my eyelash curler.

The hair on top is a dark but indefinite color. The funny thing is that there is one patch of lighter, possibly gray stuff above my right temple. It is exactly the same place where I had a slight patch of gray pre-chemo. I earned that and I’m almost happy to see it coming back. I’m guessing my hair will be about the same color without all the natural highlights that I had previously, so it will look darker at first. We’ll see about coloring or adding highlights when it gets a little longer.

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These pictures were taken 2 months post-chemo. I’m going to try to take monthly pictures so you can see my progress.

This is my current look in public. I have the same hat in black, white and navy and it is my go-to look for now. It’s more comfortable than the full wig and it keeps my head warm. That’s pretty important these days.

 

 

 

For my prayer partners: My Mom leaves the hospital tomorrow, after about ten days of up and down news. She will spend a couple weeks at a rehab facility to help her regain her strength and allow both of them to get used to the routines of dialysis. My brothers and sisters-in-law have been consulting with the doctors, researching facilities, making decisions and keeping me informed of everything that is going on. It’s hard being sidelined but I know I have to stay here and finish my treatments. I have 8 more radiation treatments so I’m hoping to complete those and then go help them with the transition to home. I haven’t experienced fatigue at this point but my skin is getting red and itchy. Johnny’s mood is currently pretty low after a brief manic episode over the weekend. Please continue to pray for some real change in his condition. Thanks.

 

 

 

 

Peace

After spending the last six months in recovery mode, things have become a little hectic during the month of October.

For one thing, October is birthday month in the Marshall/Hurni family. During my birthday week, I celebrated with lunch out three days in a row and dinner with my family on my actual birthdate. Then it was my Dad’s birthday (88) on the 13th so I drove to Detroit and celebrated with him and the family. I was still feeling pretty good and paced myself on the drive so that I could stop and rest as needed. The 16th was John’s birthday so we set aside the day for some family fun. Plan A was to visit a National Park and buy his Lifetime Senior Pass to the National Parks. The government shutdown meant that wasn’t possible. Plan B was to fly to Lake Lawn Lodge in Wisconsin for lunch. The weather nixed that idea. In the end we came up with Plan C: spending the morning at a kid’s science museum in Aurora with Kellen, lunch at Zoup!, and flying with Johnny during nap time. I think playing hooky from work was the best part of the day for John. In the evening, we ended up bringing Kellen back to our house while Laura went to be with a close friend in labor. John and I enjoyed climbing in bed with Kellen and pretending that we were settling him down. “Papa John tell me a story about a sword…Papa John….” Sweet moments. (There are still more Marshall birthdays on the 8th, 12th, 18th, 19th, and 24th, plus two wedding anniversaries.)

I spent last Monday visiting doctors. I had my radiation treatment at Elmhurst Hospital in the morning and then drove downtown to see the Nurse Practitioner to follow up with my surgeon and get a mammogram. Between the latter two appointments I became sick and had to call John to come rescue me and give me a ride home. I spent the next day recovering.

That day my Mom received a call from her myeloma specialist instructing her to go immediately to the ER. A routine blood test done the previous day showed that her kidneys were failing (an expected complication with myeloma.) She was admitted to the hospital for hydration and more tests. On Wednesday, she saw a nephrologist who recommended dialysis. After a family meeting on Thursday morning, everybody agreed on starting dialysis. A temporary port was placed that afternoon and Mom had her first dialysis and a blood transfusion simultaneously. She had another dialysis on Friday and will likely stay in the hospital over the weekend. The plan is that she will have dialysis 3 times a week (3 hours each time) through the holidays. Fortunately, there is a dialysis center right around the corner from their home so it will be convenient, though certainly a big change in the routines of their lives.

I also worked two full days this week and will work three days next week. I’d only been able to sign up for 4 days in the month of October, but thought that with the unknown of radiation side effects that might be enough. Radiation fatigue hasn’t set in yet, so when my lead nurse called to see if I could add some days, I agreed. (I’ve enjoyed the light schedule but miss the paychecks.)

By the middle of the week, I found that I was unable to turn off my brain at night. Even after a full day of work and obvious fatigue, I was bombarded by all that was going on around me. (I’ve only given you the highlights. There’s more.) I had this frustrating sense of my life being back to “before”–before the cancer, before the big slowdown, before all the rest and recovery. I had a sense of life spinning out of control and I couldn’t figure out how that had happened. I’d tried to make reasonable choices, pacing myself in my activities and limiting my commitments. (I’d been so proud of myself for giving up the goal of finishing my Dad’s quilt in time for his birthday.)

But life happens even when you’re trying to stay in recovery mode. Governments shut down, dreary clouds descend, cold weather sets in. And it isn’t all bad stuff. Babies are born on senior citizen’s birthdays and grandparents enjoy an hour of bliss with a wiggly, talkative little boy.

I’m excited daily by my new hair growth 🙂 I finished reading my last Jane Austen book and watching most of the movies/series. I enjoyed blue skies, warm weather, my red convertible, and Michigan colors on my trip. I’m already having fun thinking about Christmas and there are wedding ideas being discussed over Skype. Today we learned that Laura and Taylor’s baby is a healthy boy! (If you haven’t seen it, check out Kellen’s press conference on Facebook. It’s really funny.)

Last night I prayed for peace and God allowed me to have a refreshing night of sleep. But I’m going to need a lot more peace in the days ahead. I’ve thought of all the people praying for me and wanted to ask you to pray specifically for peace and rest in the midst of life. Please pray for my Mom & Dad as they adjust to dialysis and the changes in her health and for the rest of  the Marshall family as well. Please pray for Johnny during the coming fall, winter and holiday season. There is definitely a seasonal impact on his condition and he finds these months the most difficult. Pray for me in the daily routine of radiation and the coming side effects. (In spite of constant moisturizing, my skin is starting to redden and I’m expecting fatigue to set in. I’m also trying to ward off muscle scarring and lymphedema with specific exercises.) You can also pray for Anne and James during his six week ABS cycle when he’s busy and exhausted with 24-7 activity and responsibility. Anne is winding down her 15-month internship and trying to figure out her plans for the coming year.

I could go on, but my real prayer is for peace, for me, for my family and my extended family. Jesus told us that we’d have trouble in this world, but promised us peace, His peace that is beyond our understanding. I so want peace and I’m learning that I can’t maintain or manufacture peace on my own, even in a period of recovery.

“Peace I leave with you; My peace I give to you; not as the world gives, do I give to you. Let not your heart be troubled, nor let it be fearful. John 14:27

 

“These things I have spoken to you, that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.”John 16:33

 

 

 

 

Six-oh!

Today I turn 60. I’ll sleep in, get my radiation treatment, go out for lunch and hang with my family at Laura’s tonight. Here are some of my thoughts on turning the big six-o:

Favorite decade? More than a year ago when I started thinking about turning 60, I started asking random people what their favorite decade of life had been. Up to this point, I think I enjoyed my 30s most of all. From 28 to 38 in particular, John and I had four children. I loved being pregnant (most of the time) and loved raising my young family. We were active at church and hopeful for the future. The 40s & 50s were definitely tougher times that were far less enjoyable for me, so I was hoping that the 60s would be another great decade. The decade isn’t getting off to a great start but I’m still hopeful that I will get through this and really enjoy the next ten years.

T minus 15? Even before the cancer diagnosis, my “plan” was to die in my mid-70s. After spending 8+ years working with older patients in Internal Medicine, I decided that I really didn’t want to get old. I don’t consider 75 old but I hoped to die before I actually got old. I also had observed older saints for many years and was a bit dismayed at how few of them really looked forward to heaven. I wanted to enjoy my life on earth and still have a healthy anticipation of heaven. I wasn’t planning to actually do anything about it except hope God agreed with my plan. So, it’s kind of funny to think that I might only have 15 years of life left (and recognize that it could possibly be less.) Instead of wondering how I got so old (60!) I’d like to think how I can best use these next 15 years and then trust God for whatever actual plan He does have for my life.

And yes, I have a bucket list. Nothing requiring jumping out of airplanes or other wild adventures. I would like to:

  • Live in the city for 6-12 months
  • Winter in New Zealand
  • Visit the Scotland, particularly the Shetland Islands
  • Write a book or two
  • Paducah Quilt Show
  • Learn to weave
  • Travel USA in (small) campervan visiting National Parks
  • Own a hot tub
  • Launch Johnny
  • Live in Western Michigan
  • Meet and enjoy all my grandchildren

Somehow, my bucket list seems to miss the point spiritually. I suppose that is to be expected from a concept developed in Hollywood, but I’d like to think that I have higher goals. I just read a blog recommending coming up with a Life sentence, a single sentence that states my life purpose. One of my goals this week, as I turn 60, is to try to come up with one. At the start of my “best decade ever” with only 15 years to go 🙂  it seems like a good time to figure it out.

 

 

Welcome!!

photo-2Every morning (Monday through Friday) at 10, I am welcomed to this room where I receive four blasts of radiation. The table I’m on slides back and up and the “wings” rotate forward. My new tattoos are lined up with laser lights and treatment begins. On a good morning, the whole routine takes 15 minutes.

 

I found the first few treatments physically and mentally challenging. Holding my right arm fully extended above my head pushes the limits of my post-surgical range of motion. First pain and then numbness set in–and then I had to hold that position for 40+ minutes while they took pictures, marked me up, and accomplished whatever other prep was needed. Laying on the “rack” with the machine rotating around me and people leaving the room every few minutes to avoid radiation was a little nerve wracking.

Radiation always seems like the lesser of two evils in cancer treatment, but since I understand it less than the idea of chemo, it seems more frightening to me. After years of those protective aprons during chest or dental x-rays, now I lie completely exposed with a machine delivering much higher doses of radiation on a daily basis. Though concentrated and focused, the radiation is meant to kill any remaining cancer cells but also destroys healthy cells. I can’t help wondering what the long term effects will be? I can live with short term side effects (none yet) but I worry about scaring, lymphedema, and collateral damage to surrounding organs.

But, we do adapt and I’ve found the last couple of treatments much more comfortable. I feel welcomed when I arrive and can even say “thank you” when I leave. Seven down; twenty-one to go.

A couple nights ago I noticed a dark shadow on my head when I looked in the mirror. On closer examination I saw lots of soft downy hair–maybe 1/8 inch in length. Woohoo! Being bald has gotten a lot less interesting since the end of chemo. I’ve moaned and groaned about having to wait to have my hair grow back ever so s-l-o-w-l-y. With the changing weather, my head feels cold and while hats look more appropriate, I’m sick to death of wearing them. While I’ve got a long way to go, these first signs of new growth are at least encouraging. Oh hair, you are so welcome!

 

Mapping

Yesterday I had two appointments: My first was “mapping” for radiation and the second was a follow up appointment with my oncologist. I thought it was going to be a somewhat momentous day, but it turned out to be fairly lame and a little discouraging.

The mapping was nothing more than a CT scan which the radiologists will use to plan my radiation treatment using the scan results to figure out how to target the machines to get the best exposure in the right places, without radiating my heart, lungs and other essential organs. They want to radiate a pretty large area including the breast, the axillary and some lymph nodes near my collarbone. It will take them a few days to make their plans and then I will go in for my first session sometime next week (not Monday.) That will be an hour-long session where they do more marking and setting up, and giving me my first treatment. After that the sessions will last about 15 minutes, occurring Monday-through-Friday for around 28 sessions. I will finish a few days after Halloween. Maybe I can do a glow-in-the-dark costume.

I was given my “graduation gift” at my second appointment, a bead bracelet with a couple of pink beads and the breast cancer “ribbon” bead. I was also given a subject packet for a trial that my doctor would like me to join after I complete the radiation. Dr. Cobleigh would like me to add Everolimus to the Tamoxifen that is part of my post-chemo regimen (though there is a 50-50 chance that I’d be assigned a placebo instead.) The subject packet is about 10 pages long and at least 6 of the pages list the possible side effects of the various medications. At the top of the list for Everolimus is mouth sores, followed by infections, anemia, and so on. After managing to get through chemo without any dreaded mouth sores, it’s difficult for me to think of taking that risk again.

Participating in the trial is completely voluntary, but it is the only way to get the medicine. It is above and beyond the treatment plan that I accepted as necessary last winter so I am really struggling with the decision. I still have 5-6 weeks of radiation ahead of me, as well as at least two surgeries. I’m looking at least a yearlong process of hair regrowth. And I know I have to take Tamoxifen, an estrogen-repressing drug, for the next five years, wondering if what side effects that may produce.

I also wonder when to say “enough?” At what point do I trust the many prayers for healing that have been prayed on my behalf? And, bottom line, trust God for whatever He has for me in the days ahead? Statistically, I have a 40% chance of recurrence, according to my oncologist, but has anyone factored prayer into the studies? I have a 100% chance of dying someday and as a believer, I want to frame that positively, not spend my life trying to avoid death. I’m going to a better place–and while I might not want to go just yet–I do want to anticipate heaven more than I want to cling to whatever life I can squeeze out of this body. I also don’t want to spend that life being sick.

Another smaller decision is whether to have the port taken out. My doctor likes to leave it in for 2 years but I would like it out. The surgeon who put it in told me that it was up to me and from the beginning I’ve planned to have it taken out sooner rather than later. First of all, the reason for leaving it in is for the possibility of future chemo. If I am reluctant to consider further chemotherapy, it seems silly to leave it in. (The surgeon who put it in told me he could put another one in if needed.) It also lies just beneath my left collarbone, right in the path of my seatbelt and bothers my sleep in certain positions. Those seem like good enough reasons to have it removed. Plus, it could be done during either of the two surgeries I will undergo this fall/winter, thus requiring one less surgery down the road (albeit minor.)

I’ve been a “good” (i.e. compliant) patient throughout this process, fairly passively accepting the recommendations of my specialists for surgery, chemo, radiation and Tamoxifen. Now I’m wondering if it isn’t time for me to take a stronger role in the decisions before me–and feeling a bit guilty in the process. (I think that’s the nurse in me.) I really don’t have to decide anything right away, but i find myself carrying on a non-stop argument, weighing the pros and cons, trying to see all the angles. Maybe I’m “mapping” the decision.

P.S. I discussed it with my primary care doctor today and after looking at the information, he agreed that Everolimus comes with a pretty high side effect profile so I felt justified in my concerns about entering this trial. No decision yet, but I feel more at peace about the process.