Monday, February 25, 2008

We're Moving

What: John, James, and I are moving. John is being appointed to a new church.
Where: Royal Oak First United Methodist Church
When: June

This was announced at both churches Sunday morning.

Story

Tuesday - Where I Was

My Home Health Nurse had told me three ingredients for healing are:
1) Protein
2) Comfort
3) No/minimal stress

Tuesday morning, I had intentionally decided to let a particular stressor go. I acknowledged my job for the next six months or so is to undergo chemotherapy treatments and to concentrate on healing.

Then came Tuesday night... and a phone call for John.
The Cabinet was assigning him a new appointment.
We would be moving.

I had just encouraged our son James who had been looking for housing in his price range and close enough to his job in Plymouth, to not worry, that I thought we were "safe", that no one would move us in the middle of chemotherapy.

Just shows how self-centered the life of a cancer patient can be.

Life goes on!


Processing
A lot of emotions and processing can be involved with unexpected news. But by Friday night, when John, James and I went to the "Introductory Meeting" with the Staff-Parish Committee at the Royal Oak church, we were mentally open to new possibilities.

The people were wonderful and welcoming!
Plus - bonus surprise - longtime school friend, Kip G-T was on the committee and added her own warmth and enthusiasm.

Meeting Each Other
I was concerned for the group when I said I had cancer.
The room was quiet; what can one say?


There we were:
Their terrific new pastor.
The 24-year-old son who was willing to be involved and active.
Then the wife... so broken and vulnerable.


I had mentally prepared a little speech in case they had questions:
"Would I have expected to move in the middle of chemotherapy?
No, but I had not expected to go to Africa either.
And I did last summer with John's sabbatical.
I found that God's unexpected blessings and grace are no less real, in fact, more real, than any I could imagine."

But they never questioned.
Instead, this group of people on the Royal Oak Staff-Parish Committe said,
"It is our job to support you."
"We will help make this work for you."
"Let us know what you need."

Wow.
Such unexpected blessings and grace.

The Body of Christ...
alive...for us.... in us.

My concept of "home" is expanding.
I trust God - and the Royal Oak people - are preparing a place for me.
And a place in me, for them.

Saturday, February 23, 2008

Ta-Daa!

Welcome, Friend Chemo, do your stuff!
My head is ready!


(I pretty much had to talk Julie into cutting this much off.
But then she knew exactly what to do!)

Friday, February 22, 2008

Treatment and Support

Expected Course of Treatment
How long does treatment last?
If I stay on the course of six cycles of chemotherapy, every four weeks, Cycle # 6 should begin in July (meaning have the chemotherapy treatment, then go through the cycle of chemo effects).

So I am looking forward to summer sunshine and healing warmth!

I am also looking forward to my high school class reunion (year 35) on August 2!


Support - Ministries of Our Church

"Parish Nurse"
Karen B. came out this week and sat down with us to help with some of the balancing issues. Helpful!

"Touched by an Angel"
There was a TV show by that name. But our church also has a ministry of helping people out in tangible ways. Judy B. coordinates meals that come to us a couple times a week (complete with nutrution requests/restrictions). I could not have imagined how helpful that is!

"Peer Ministry"
High schoolers learn about helping relationships. They put together a canister with lots of goodies, cards, Isaiah the Teddy Bear, hand lotion, and a Sheryl Crow CD.

Sheryl Crow? I know who she is: she dated Lance Armstrong and had breast cancer. But I admit I had not paid much attention to her music. I thought I might listen to her as I was lying down for a nap one day. Ha! I did discover that she was terrific to play while taking my walks around the house! (The Home Health Care nurse said I should walk at least three minutes three times per day. I walk more when I can.)

"Stephen Ministry"
Nancy S. brought flowers over when I came home from the hospital. I know I am in their prayers.

"Prayer Shawl"
Karen D. brought one over before surgery. The idea is that people pray as they knit or crochet shawls, for whomever might receive it. It often keeps my shoulders warm around the house and reminds me that I have been, and am, remembered in prayer.

We also received a cow box (Gateway computers black and white pattern) in the mail. It had to be sent from the Curtiss family! Sure enough, it contained a "Prayer shawl" from our Traverse City congregation (we were there 8 years). They are known as Traverse Bay United Methodist Church now, but we knew them as "Asbury U.M.C.". I wore this around my shoulders during chemo. Each shawl is unique and beautiful and conveys warmth and loving prayers and wishes.

Thursday, February 21, 2008

Good Days

It seems self-centered to call particular days "good" just because I am feeling relatively good and have a good appetite. However, I will still leave the title, as it does fit, and I am not saying other days are "bad".

Catching up
I have felt particularly good for about the last three days. I have had an appetite and have been enjoying food, and really have just been quite happy about that!

Balance

Before that I had been struggling more with balance.
From life decisions to bowel function.
How active vs. restive should I be?
I am finding more balance, and realize that each day, maybe each moment may hold those questions...
and am thankful for help in the process of working them out.

Tuesday - Wig Day and a Visit to Randa's
The big event on Tuesday, was that Molly G. came over (with her wisdom and experience and good humor), and John drove all three of us to Randa's Cutting Edge on Mound Rd., south of 14 Mile in Warren. I had not definitely decided to get a wig. The people at chemotherapy said not everyone does, and that there are lots of other comfortable head coverings. But they also gave me a card for Randa's, saying she gives "Free wigs to cancer patients". So I thought I
would try it out as an option. Randa is a really kind and generous and sweet woman, and sent me home with two wigs actually. I had not expected to duplicate my own hair, so my goal was more some sort of head covering... maybe more for fun than to try to look exactly like I look now. So they are both short and different from my current hair.

Tomorrow's Hair
Even though my hair is not falling out yet, I know it will. My plan has been to get it cut short, rather than to find long hanks of it on my pillow in the morning. So even though my head and neck are still loving that warm protection today, my "nadir" (low white blood count) days are expected to be coming up this coming
week, and it seems better to get out while I am more able. Tomorrow, Nicole is coming to take me to see Julie, who will cut my hair SHORT!


Wise Parental Advice
Mom told me to keep smiling.
Dad told me I do not have to always smile.
I need both those words!
Thanks!
I love you!

"For everything there is a season,
and a time for every purpose under heaven."
Ecclesiastes 3:1

Friday, February 15, 2008

"If You Give a Mouse a Cookie"

There is a children's book by that name that tells a story of one thing leading to another. (If you give a mouse a cookie, then you will have to give it a glass of milk, etc...) I am experiencing some of that. There was chemo on Wednesday and thus anti-nausea medicine, which seemed to work well. Then on Thursday, we went back to the doctor's office for an injection of "Neulasta", which is "white blood cell booster" to help protect against chemotherapy-related infection. In case that makes my joints hurt (it goes to the bone marrow), I can take Tylenol. In the meantime, because of taking iron and other drugs, there are other drugs to take for constipation, like Senokot-S and Milk of Magnesia. And now I need to balance those all out.

Two other highlights of Thursday:
- On the way home from the doctor's, we stopped by the Secretary of State to get my driver's license renewed (and got my picture taken while I still have hair).

- Friend Debbie came over in the a.m. and helped with cleaning. Ah... Thanks so much.

Wednesday, February 13, 2008

Chemo #1 - I Did Take Steroids

Today was my first chemotherapy day. My appointment was at 10:00 a.m, and I think we were done by 4:00 p.m. (including our questions), sooner than I expected really.

I walked out of the chemo ("infusion therapy") room at my doctor's office into the reception area, where a TV news show featured Roger Clemens declaring that he has never had steroids. I do not know about anyone else, but I will tell you they were part of my preparation for chemo, and along with everything else, have seemed to work very well so far. So far, no nausea. It could still appear, but I am glad that so far, so good. I think the steroids really picked up my appetite too. I came home So Hungry! I actually ate quite a bit of food for me these days. Of course I filled up quickly. And I had no naps today. So now my energy has worn off. (Next time I should be intentional about grabbing some z's at chemo. The pre-drugs made me a little sleepy.)

I did get some more dates for my upcoming schedule:


Feb. 14, Thursday
Back to Dr. Malviya's office for 24-hour-post-chemo injection to help protect bone marrow.

Feb. 27, Wed.

Go to the Lab for a "Blood Draw ".
In the next 7-14 days, my immune system may be lower, so they want to check what, if anything, I might need for that.

(John and I are also hoping to stop by a Secretary of State office while we are out to get my driver's license renewed - even though I can't drive for 6 weeks.)

March 10, Monday

Another Blood Draw to make sure that my counts are high enough for the next chemo.

March 12, Wednesday Noon.

Chemo Day #2.

March 14, Friday

Appointment to see Dr. Malviya

There is a plan, and it seems to be working well.

Oh, also John brought me an early "Valentine's present": a portable CD player, so if I want to listen to an audio book in the future, that is an option. (My library has resources!)


I mostly just read through today's paper and this week's Newsweek magazine today. Little articles seemed good for my attention span.

Some people told me they were specifically praying for me today.
Thank you so much.
It was a good day.
Love,
Laura

Thankful...

for
food brought over by "Touched by an Angel" volunteers and others,
flowers,
family,
friends,
neighbors,
offers of help still to be called on,
doctors,
nurses,
insurance,
car that works,
warm house,
"prayer shawls",
mending bladder,
healthy cells,
dragon-slaying medicine,
John

and other companion-travelers,
Loving God.

Monday, February 11, 2008

Out From the Cave

Today's Visit to Dr. Malviya's Office

John and I went back to Dr. Malviya's office today, not entirely sure what the day would hold. They re-checked my bladder function, and it appears to be progressing ok. I don't have to measure output, but remain conscious and intentional about it.

They also checked my blood, which looks fine.

So I will begin chemotherapy on Wednesday. 10:00 a.m. I will be given an "IV", through which the two different "chemo" drugs will be fed into my vein (first one, then the other), along with other helpful drugs, over several hours. A plan is unfolding. We saw the "chemo" room where we will be at Dr. Malviya's office (the building is near, but separate from Providence Hospital in Southfield). There are comfortable chairs for the patients and not-so-comfortable chairs for their guest. There is a TV for each patient, and I can bring food and things to do (magazines, etc.).

I will have medicine to help control nausea, beginning with five pills at 10:00 p.m. Tuesday night, and another five at 4:00 a.m. Wednesday morning.

Once again, I know I am in good hands.



Fireworks Hair

I like my hair. I have mostly kept a simple cut. Usually on the long side. When I was younger, I was sometimes referred to the "girl with the long blond hair and glasses". I seem to remember having a radical (for me) cut around my shoulders sometime in high school. Then, right before my wedding, I had it cut very short, maybe a little rebellion against the traditional long hair of brides, or maybe a little inspiration by Princess Diana. I am not sure. Anyway, I grew it out again. My default was always to let it grow. Sometime after Carrie was born, I got a short cut and curly perm. Wow, that was extreme for me. And fun. But since then, I have mainly had it cut between my chin and shoulders, maybe a little below. Simple to maintain. Easy to pull back for work. A good protection for my neck from sunburn. A nice cover to keep my head warm.

I also have never chosen the color. It has varied somewhat with sunlight and shadow. But it has settled into a warm honey, either dark blond or light brown. And more recently, I have been watching starbursts of silver. I was looking forward to all those colors combining. It seemed pretty exciting, and in my private effort at looking at aging with a positive attitude, I have thought of the change as "fireworks in my hair".

However, it seems I will be watching a different change. Dr. Malviya said the chemotherapy will probably cause the hair to fall out in about a month. I am not sure exactly what that means - at what rate, how much - more of what I do not know.

(I am prepared to receive no sympathy from male classmates/other friends or certain family members.)

I wondered what people do. It was sounding like everyone gets wigs. But today, the nurse told me not everyone does. They may chose hats or scarves or some type of covering. (The head gets cold.) I am glad she said that. There are options.

Saturday, February 9, 2008

Footprints from the Cave

I am trying to find a balance of inner and outer space.
I probably really am healing up well from surgery.
But I cannot just rest now.
The work of chemotherapy begins this coming week.

John and I went to the oncologist for my "post-op" visit on Friday. The project of the day was bladder function. Dr. Malviya had sent me home from the hospital a week ago today with a catheter, trying to retrain the bladder to function on its own, since nerve endings had no doubt been involved in the areas where they worked during surgery. So we tried out the bladder (removed catheter at home) when we first got to the office at 1:00 pm, then were sent to the mall to walk around for 4 or 5 hours (my first outing), then we returned to the office for a second chance. I can make urine, but I was still retaining too much. So I am measuring and recording all out-put and will report back to him on Sunday by phone. If I seem to be doing ok with that, my understanding is that I will call on Monday to see the next step.

After some conferencing time, which our Parish Nurse Karen DeBenedet also attended, we arrived home around 11:00 at night. I had been setting my alarm for 7:30 (never mind that I woke earlier). But Dr. Malviya wants me to get up at 6:00 am to begin the bladder practice. I am sleeping mostly through the night now, which is a help.

I have been thinking about a story called, "Footprints in the Sand" by Mary Stevenson, in which a man reviewed his life in a dream, walking along the beach with the Lord. When he noticed places where there were only one set of footprints, he wondered aloud to the Lord if he had been left alone in his hard times. "The Lord replied, 'The times when you have seen only one set of footprints in the sand, is when I carried you.'"

I feel like that... that I am not in control, and things may look harder and scarier than I would have wanted. And yet, I know I am being carried in the Lord's arms. Always warmly, safely, lovingly. Whatever goes on around me and in my body. I know support also comes from those around me, near and far. Your love carries me as well.

I have not been writing as much during this recuperating time. I may think I need to carry my weight and write to keep up my end of communication. But I thought of this story, and reflected that there are times I am just being carried.

Quiet blessings and thankfulness...

P.S. Keeping track of the family.
Carrie drove safely back to her home in Philadelphia on Thursday. I miss her bunches.

Wednesday, February 6, 2008

Time Release Blessing

Laura continues to heal from her surgery. Every day I can see the little signs: her voice is coming back and with it, so is her level of conversation; she gets up more frequently - at times our biggest job is encouraging her to stay still; she is paying close attention to her schedule; she laughs more freely with less wincing. Her strength is returning and she is doing admirably well pulling herself in and out of bed. I am discovering she must be quite an athlete.

Healing, we have found, comes with time release blessing. The flow of care from our church, our other friends, and our family keeps gracing her with encouragement and love. Prayers, still are lifted up and she can feel them; so can I. Food that comes through a formal ministry at church which coordinates menu and delivery keeps us well-fed and more able to focus our attention on Laura. Cards are overflowing a basket I set out to contain them; many have notes that lift her spirits.

Our daughter, Carrie, has been with us since Tuesday, bringing her work and well-wishes of a boss and client who encouraged her to work from Michigan for as long as she needed. (Thursday she drives back to Philly, but the afterglow of her smile and resonance of her laughter will continue to bless us). James provides his computer counsel and a steady flow of witty remarks. He coordinates his personal schedule to be certain someone is always here with his mom. His girlfriend, Sarah, gives her hugs.

Laura's parents were able to drive between snow storms to be with her for a while each day since Monday. On Wednesday, I needed to work for a few hours back at the church, and they stayed with her while I was away. They had wanted to be with her during surgery, but it is evident that they were here at the right time: a time that their love and touch would work the strongest for her.


Laura told me to write this: her legs had begun to swell, and we were concerned about it; so I left a message at Dr. Malviya's office. He was so kind to return my call later in the evening, advising me to purchase post-surgical support hose. I found a pair at the fourth store I visited and returned home with the prize. Support stockings are...snug. Following the directions on the box to the letter, I turned them inside-out and placed them on her feet, rolling and pulling each to fit over her legs. It is amazing how much abuse she was able to tolerate. I learned three things: 1) I am not a very adept nurse; 2) you should not treat a patient in the same manner as you might try to move rocks with two-by-fours; and 3) Laura has an amazing patience and capacity for forgiveness. The stockings turned out to be a big help.

Blessings: everywhere we turn. It's kind of like a capsule that works for hours in continuous, intermittent release. God puts so many of you in the right place at the right time to provide the right dose of the blessing she needs next. Thank you.

Monday, February 4, 2008

Note from the Cave


Thank you so much for your prayers and caring for me and my whole family. It truly is more than I can say or even know. But simply, thank you. It is so good to be home.

Tonight, I peek out of my little cave - or cocoon. I will pop back in soon. I am on a tight schedule. I never realized recovery was such complicated work. Glad work, of course.

I have been working on refining my schedule today. Some things just seemed impossible, like taking thyroid medicine and iron both on an empty stomach and one hour before food, but four hours away from each other (the iron needs to be taken twice in the day). It boils down to, I cannot just wake up or eat when I choose. All the meds and other tasks need to be coordinated very closely.

You might not know this part. Two conditions of my coming home Saturday night were that I wore home my catheter and that I have a home health care nurse. Our first visit was Sunday. My bladder needs "retraining" (not uncommon for this kind of thing). So I am on a schedule of clamping the catheter off for three hours and leaving it open one hour.

As for intake... At night, I pour into a pitcher my next day's allotment of water, so as soon as I get up, I can get the first pill and be on my way. I started out drinking way too much water, thinking that was a good thing, and wreaked havoc, with the "training" schedule of leaving the cath clamped for three ----- whole ----- hours. When I called in discomfort, the doctor's message was to follow directions Exactly. Drink 6-8 glasses fluids....which by the time I take my meds does not leave much for pure pleasure or wetting my whistle if I talk too much. I asked my family, that unlike our usual schedule, to try to have most conversations with me before 8:00 p.m. when fluids are stopped for the night.

We see Dr. Malviya Friday to see how things are doing.

In the meantime, I am trying to lay low, walking around some (to prevent clots, etc.), while today, also keeping my feet up part time because of leg swelling.

My parents drove down to see me today, and are staying at Allan's (my brother) in Novi. Carrie is also still here, managing to work a lot by phone/computer while also helping John care for me. James and Sarah planted his herb garden kit (Christmas gift from Carrie) here tonight... My life at home ... I love it.

And now, back to my cave, where one of my goals is still to sleep through the night, because there seems to be no time left in the day for naps!

Thanks for your patience in my time tucked away. I know you are there, and I appreciate it. I am between a place where I really want to write and do more... and a place where I need, beside prayers, quiet and peace and time away from the world for this first week of recovery at home.

I am still here.

Saturday, February 2, 2008

Home

The only person who could be more thrilled about the doctor discharging Laura from the hospital than me would be Laura. She is thrilled.


At the time of this writing, we are awaiting final instructions from her nurse. Then she will dress in the new sweats that we purchased last week for this occasion, be released from Providence Hospital 3 South, feel the cool of the air and smell the new-fallen snow as she climbs into the car.

God is good. Home awaits her. She smiles.

Friday, February 1, 2008

More Progress, and Some Results

Today Mom continued to make progress with her post-surgery recovery and is feeling better. Her walks were longer and quicker moving. She is also very glad for ice chips! Diet is still restricted to popsicles. They’re working on returning her body to normal basic functioning. She’s also becoming much more independent, getting in and out of bed like a pro. It still hurts to laugh, though, which was tough to avoid today with all the joking around!


We also did receive some (but not all) of the pathology reports this afternoon. Dr. Malviya explained the information he had so far, and also made some recommendations for next steps. He is still waiting for some cytology reports to be released. Karen DeBenedet (parish nurse) was able to be present for this. It was helpful for Karen to be there, as she was able to ask specific questions and explain things in common terms to my parents and to me.

The cancer type is papillary serous adenocarcinoma. It is a complex type of cancer that can look well-differentiated, yet doesn’t behave that way. The up-side is that the cancer likely has not spread much, if any, based on the reports we have so far. The doctor is waiting to receive the remaining results before determining the stage of the cancer. Regardless of those results, he is recommending chemotherapy to treat any lingering cancer cells if they exist.

Her spirits were further lifted by a visit from family friend Marsha Woolley, who is a pastor in Livonia. Marsha had offered prayer before Mom’s surgery on Monday. She also stayed most of that day with Dad along with several other family members and friends. Her prayers in the hospital have been joined by the visits and prayers of sister Bonnie, brother Allan, friends Tom and Sherry Hartley, friend and District Superintendent Tom Macaulay, and cousin Judi Fidh.


She asks her family and friends to STAY HEALTHY. That means all of us need to eat nutritiously and get good rest. The prospect of her getting sick would interrupt her schedule, which might reduce the effectiveness of the treatment.


Overall the results of today were encouraging to Mom and to the rest of us. And although we know there is work to be done, the goal is a cure.