Date Night

We knew today would be long and intense, so we had our favorite game to play together while we waited. We try not to be disrespectful to the severity of the mood, or mock the struggles of the waiting families, but it is a very long wait and precious time for the two of is just to be together:

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I did take off my fancy court hair as soon as we were out, and startled the lady getting in the car next to us. That was kind of awesome.

We had plans to take Keyssie to dinner and a movie, but she was not home! We couldn’t believe she wasn’t home, when we even called her this morning to remind her we were coming. I brought a new phone to give her and everything! That girl!

It means, though, we got a surprise dinner date just us!

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We called her after dinner, and she was so glad we tried again. She had worked late and missed us, and thought we left without her. So we ran back to her place again and picked her up for the movie!

And I wish I could have recorded her squeal when she saw her phone:

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And, because we gave her a new phone, that was the end of chatting with her:

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Gotta love teenagers, even if they are the grown-up ones.

Job’s Job

After some very hard weeks, this weekend was much better!  I was able to participate with family activities on Saturday, even though I modified most everything to be sitting down.  I made it through church on Sunday, for the first time since surgery, and even stayed for Sunday school.  I was not able to make it through third hour for the ladies meeting, but when I heard it was about visiting teaching, then I was really glad I had taken vegetables to my ladies the day before!  That is not the same as visiting teaching, though, and right now the ladies I am supposed to check on keep checking on me.

I took it easy yesterday, but even by evening I was well enough still to sit with the family at the dinner table, and Nathan’s parents came over, and I was able to stay up and chat with them.  It was amazing!  It’s been six weeks at least!  I did make it through both Saturday and Sunday with almost no pain, though I was very, very, very tired very, very, very easily.

Today, though?  Today was AMAZING.  It was absolutely the best I have felt so far since surgery, maybe even since I got sick before, maybe even since before my last miscarriage.  Not only did I remain pain free – despite a tiny and slow one mile walk this morning – but my energy was much more up today!  I was almost peppy!  I danced in the living room and everything!

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I got both kids up and ready for the day, gave them breakfast, cooked my own breakfast, took them both to school, did the dishes, and hung up laundry.  You would think I was almost functioning!  I even took my shower and did my scripture study without needing a nap in between!  I spent most of the day writing, found out a ton of previous articles have been published on other sites, and got on my knees to thank my Father-in-Heaven for such fun provision for my family while I am stuck at home sick.  All our bills are now paid for this month, I have had three good days in a row, and officially go back to work a week from tomorrow (doctor approval still pending).

I really, really do not need more treatments to interrupt this loveliness right now, and will stall as long as I can get away with it.  In the meantime, I am not going to lose this feeling by worrying about treatments right now.  Today is not about recovery; it is about dancing.

Except sometimes you have to dance your way through recovery.

Yesterday’s Sunday School lesson was about Job, the guy who lost everything and loved God still anyway, and that just made me snort as I walked into the classroom.  Naturally, my first day back to sunday school would have a lesson on Job. How could I expect any less?

Nathan says that he learned at BYU that the book of Job is actually a play.  I mean, it is based on real guy, and other scriptures confirm that, but the story that is presented in the Old Testament is actually a play.  It’s a script.  That’s amazing, I think, and so he and I talked with our home teachers yesterday about that a little, and about the truths we gain from literature.

Because we have awesome new home teachers that are math-heads, but let us be writers and love us anyway, that’s why.

Anyway, our Sunday school teacher said that Job’s “trials were to prove his righteousness purely, even outside of being rewarded with and comforted by blessings”.  I had never thought about that!  I knew that trials didn’t always mean we were failing, or being punished, though sometimes my grew-up-Baptist Self has a hard time remembering it.  I knew that all experiences teach me, and so even trials can “prove” me – not because Heavenly Father wants to attack me, but because I get opportunities to make good choices regardless of circumstances.

But I had only thought of those circumstances as being hard or difficult or challenging.

I had not put it in the context of blessings or comfort being withheld for a time.

In fact, I am not sure – even with all I have been through in recent years – that I could say I have ever had it so rough as to have comfort withheld.  I have grieved, and been in great pain, and even lost my hair three times in the last five years.  But there has always been comfort: a well-timed popsicle, a hug from a friend, a visit from a colleague, fish and broccoli just when I wake up hungry, artwork from my children, that dance with my husband in the kitchen.  There is always something.  I am grateful for mercy in this, and pray for strength if I should ever endure less favorable circumstances.

The other point that really got me in Sunday School was a comment someone made.  You know that old adage people say, about God not giving you more than you can handle?  That’s false doctrine, actually, because the whole reason for the atonement is that we cannot handle things.  That being said, someone pointed out that the trials Job experienced “were within his capacity, with his faith and spiritual gifts, even though it was a really hard experience”.  That I loved, a lot.  It is true, that by the power of God we can do hard things we never could endure otherwise.

We watched a 50 second clip of Elder Scott encouraging us to claim that power through trials:

(And hey! I found the clip on the free-for-all-to-use church media library page that Elder Bednar talked about last week!  Check it out HERE if you haven’t yet!  And watch Bednar’s talk about it HERE! You can use the link if you are reading from the Housewifeclass app, since it does not yet support video.)

What I love, is the part were Job shares his testimony, even after all he has been through (Job 19:25-27):

25 For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth:
26 And though after my skin worms destroy this body, yet in my flesh shall I see God:
 27 Whom I shall see for myself, and mine eyes shall behold, and not another; though my reins be consumed within me.

We had to listen to the song, then, I Know That My Redeemer Lives, which almost made me cry because it’s one of those hymns that even my Baptist parents knew, and so I always feel them close when I see those songs.

And then, as if it had not been nerd heaven already, we got an Orson Whitney quote, just like that [Orson F. Whitney, in Spencer W. Kimball, Faith Precedes the Miracle(1972), 98.]:

No pain that we suffer, no trial that we experience is wasted. … All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

While I have homework to do on enduring patiently, I am grateful His great plan of happiness includes a way to make me more tender and charitable.

And I think, just maybe, it’s understanding these experiences as part of my education in this mortal school that makes the enduring part possible.

Even on good days you just want to enjoy before the next hard days come.

That’s my job today: just to enjoy this very good day while it’s here.

Band Together

The clinical team gave both Nathan and I the new “orbit” band, with website access for a year.

His is the public one being released this month, and mine has extra beta programs for medical monitoring.

How cool is that?

It constantly monitors my heart rate, oxygen, temperature, and all kinds of things, as well as our activity levels, sleep quality, and exercise.

Besides that, it syncs with both the apps we use for nutrition and exercise, so ultimately it gives a very detailed report.

It is both amazing and creepy.

Especially when it vibrates because we have been too inactive for too long at once, or if I am doing too much and am supposed to go sit down, or when it is time for medicine or food.

Oh! And they can send me messages on it, and it vibrates so I know to look, then the message scrolls across.

How crazy is that?

I can’t wait to try it out as I start being able to do more things physically, and spent tonight getting comfortable with it on all the time now.

So wild, all this technology!

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Salvaging Treatment

On this morning, when we are celebrating me sleeping all night plus one entire hour on my tummy, let’s review what we have learned:

1. Cancer is scary. And exhausting. And annoying.

2. Ovarian cancer is a “chronic cancer”, like leukemia and some lymphomas, so that it it is really, really likely to come back. The American Cancer Society says that it “can be closely watched and treated, but sometimes it never completely goes away”. They say, like the doctors, that the “cancer may be controlled with treatment, meaning it might seem to go away… and it doesn’t grow or spread as long as you are getting maintenance treatment. Sometimes… you can take a break until the cancer starts to grow again. But in either of these cases the cancer is still there – it doesn’t go away and stay away – it’s not cured.”

3. When we finally finish week two and head into week three where I feel better, it turns out I get pretty snarky in my writing tone. I think this is my resilience rallying, my determination finally getting a grip, or some part of me being relieved to know we have made it through the other side, again.

4. There are two kinds of remission: complete and partial. Complete remission means nothing at all is showing up in scans or blood work, for at least six months. Partial remission means 50% improvement in lab work and/or reduction in measurable tumor, for at least three months.

5. Ovarian cancer usually has a pattern of recurrence and remission, so there are lots of treatments (not just chemo) to control the cancer, relieve symptoms, and allow me to live longer.

6. Recurrence is not my fault. It doesn’t happen because I did something wrong or failed to do something I should have done. Just because I had some treatments two years ago and now it is back full force does not mean I did something wrong back then or now.

7. When cancer comes back, it is called “recurrence” or “progression”.

8. No matter where cancer shows up in me, it will always be called ovarian cancer because that’s where it was first.

9. When cancer is being controlled by treatments – like surgery, chemo, nutrition, medications, clinical trials and that medication, etc. – it is called “stable”. When it is stable long enough, that can lead to “remission”. It takes five years of remission to be “cured”.

10. Chemo can be given in regular intervals to keep the cancer “stable” (to stop it from progressing), but over time this can cause resistance in some cases. Sometimes chemo is only given when cancer becomes active again.

11. Monitoring is the regular checking on cancer, through scans and vitals and lab work. For me, this includes the fancy clinical trial orbit bracelets we will get to wear. This gives me an illusion of safety and freedom, allegedly, because we can be immediately alerted to any changes in vitals, and so tackle treatment preemptively instead of only being on the defense.

12. Palliative care doesn’t mean I am dying. Palliative care treats symptoms I experience, rather than treating the cancer itself. Nutrition for energy and wellness, pain medicine, breathing exercises for pain, medicine for nausea, vitamins and medicine to fight fatigue, medicine or oxygen for shortness of breath, anything that keeps down fevers, all of that counts as palliative care. Some people call it “supportive care”, and we just usually refer to it in general as part of our treatment team because it’s just another part of treatment and always a part of my handfuls of pills.

13. Treatment options depend on insurance and/or money. I will have insurance as long as I can keep my job, but not working enough hours means I will have to pay for it instead of my company paying for the insurance, which means half of what money I do make goes to paying for insurance instead of bills, which leaves little for extra treatment options. Already we have been so grateful for my benefits, though, as much of the palliative care – not counting paying for surgery or even just $250 in lab work twice a week – would not even be possible without the benefits provided by my office, which is more than most provide.

14. More than 70% of ovarian cancer patients never go into remission after they are diagnosed and so do not survive. For the 30% of those who do go into remission, half of those have a recurrence within two years (lucky me). When you have recurrent ovarian cancer, and have to have a second surgery and treatments again these two years later, it is called “salvage chemotherapy”. I think that makes me sound like a junkyard. Texas oncology, who may now own the rights to my rope of rocks, says that “the average duration of survival after recurrence of ovarian cancer is about 12 to 18 months. Fewer than one in ten patients survive beyond 5 years following standard salvage chemotherapy treatment.”

How does less than one in ten survive? Is that like half a person? Will it be my top half or bottom half? My left half or my right half?

15. They say fighting depression through this is a biggie. That’s part of the focus on wellness, as the better I can feel the better my body can cope with things, whether that is treatments or daily meds or enduring such an emotional process. They tell me to eat well and exercise, to stay relaxed, to let friends cheer me up, to be aware of fears but let them go, to express my feelings to my friends and loved ones, focus on a positive attitude, and to enjoy the present moment.

Basically, it means that for the next five years I am supposed to try not to be depressed about my good days feeling like a really bad flu and the bad days being really bad. The flu for five years? I don’t have to fake-enjoy that, but definitely can appreciate that every day is a miracle, and that every day is one day closer to the magical five year mark.

This is what the pamphlet they gave me says, also on the ACA website:

Living with cancer is not so much about “getting back to normal” as it is learning what’s normal for you now. People often say that life has new meaning or that they look at things differently now. Every day takes on new meaning.

Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. It may mean fitting cancer treatments into your work and vacation schedule. It will mean making treatment part of your everyday life – treatments that you may be getting for the rest of your life.

Living with cancer is not so much about “getting back to normal” as it is learning what’s normal for you now. People often say that life has new meaning or that they look at things differently now. Every day takes on new meaning.

Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. It may mean fitting cancer treatments into your work and vacation schedule. It will mean making treatment part of your everyday life – treatments that you may be getting for the rest of your life.

It’s normal to feel sad when you find out that the cancer cannot be cured. This sadness may not go away, even if you know that there’s a good chance you can live a long time with cancer. You now know that your life is likely to be shorter than you expected, and that you may have limits on what you can do. You may find yourself grieving the loss of what you thought would be your future. Cherished dreams and milestones suddenly become unlikely. This is hard for anyone to handle without emotional support.

I have been flooded with support, as has my family, and we are so grateful.

The card my visiting teachers left yesterday quoted my patriarchal blessing, even though they thought they were quoting D&C 84:88.

And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.

Sufficient Slacker

I am a total slacker, just so you know.  After yesterday’s adventures, I slept until 11 this morning!

And then, on a wild duck chase of a goose of a prompting, I made Nathan take us to the phone store today.  The plan wasn’t to spend money, but to investigate what was going on with our phone bill and fix his broken phone and mine.  We do not have a home phone, so only our cells, plus the cell for my mom’s best friend Jo, but our bill has been crazy.  No one is abusing it or talking too much or texting too much, but something just wasn’t right.  I have been researching plans lately, and wanted to straighten things out a little.  For some reason, today was the day.

And it worked!  Not only did I cut our phone bill while keeping all the same services, but I was able to add Keyssie to our family plan without it costing us more money (mostly because there is an option where I can easily switch off her data if she forgets her movies are for wireless only!).  It was a bizarre experience of feeling like a grown-up wise adult, when really I just know it was a prompting so we had to go take care of it.  The timing issue, I think, was because Nathan and I were both eligible for the free phone upgrades, which we needed because two of the buttons don’t even work anymore.  I am so glad we got that taken care of, and am relieved it will be saving us money, also.

I really, honestly think the prompting came in response to a prayer about wanting to be a good steward of the funds people have donated to help us.  I wanted there to be a good accounting, and was trying to think what else we could do without.  I did not get any answer about anything restrictive or punitive, and know we are so blessed, but I did get that prompting to go clean up the phone bill – which I inherited from my mother – and so it feels good for that to be updated and fitting our family a little more specifically so we are not paying for services we no longer need.

People have helped so much.  I woke up the other morning, and there was a $100 bill under my water cup beside my bed.  We were reading scriptures the other night, and Brother Vivian was suddenly whizzing past the window mowing our lawn.  Sister Vivian picked Five up from school today, and took him swimming.  The Bayles family brought the fundraiser money over, and with the money we saved on the phone bill, it was all exactly enough.  We don’t even need to buy food this week or next, because someone got us the Bountiful Baskets again, and our caseworker brought by garden things and extra groceries, and the Relief Society has kept us stocked in frozen meals.

We have, exactly, sufficient for our needs.  Again.

It would make me cry, if I were a sappy girl.

And if I were crying, just hypothetically speaking, it would maybe also be because my visiting teachers and some other ladies came and cleaned my house while we were gone today.

I had to talk to my doctor because one of the caseworkers said we could not be approved for adoption while on chemo, even if any family could get cancer.  This would go in her report, she said, if I am still taking treatments.

What that feels like, is a bully.

What that feels like, is giving up treatments to save me so that I can save my children instead.

That’s not okay with me.

What is okay with me is meeting with my doctor about lab work, blood tests, and scans to discuss timing and amounts of treatments.  What is okay with me is praying with my husband about all the variety of treatment options we have.  What is okay with me is continuing to focus on nutrition and health in ways that our family needs to learn anyway.  What is okay with me is being well, so that I am as prepared for the next chemo battle as possible – whether that is next Friday, or in six months, or in five years, or twenty, or never again.

So that’s why I had to talk to the doctor, and how I will get a letter out of him on Monday (pending blood work results), and why I will go back to see him again on Wednesday next week.  What counts as cancer, I asked him, if you say you got it all out?  What counts as remission, if you got it all out, but I am not cured for five more years?

Cancer is some long-term nasty, that’s what I learned.

It was overwhelming, and exhausting, but I came home to a house so clean it smelled like a tv commercial.  I really did cry.  Those sweet ladies worked so hard, and I am so sorry.  Everything is a mess.  The kids are trying hard to pick up the living room and their rooms, and I saw Nathan sweeping under the toddler’s chair at the table this morning.  But our bedroom has little piles of things left for me to sort through or put away because they are things I can do, although I can only do a little at a time so it piles up.  The kitchen is chaos, though I am trying to do dishes sometimes now.  The office room is piled with foster care things left from the last newborn we had, but not put away all the way because surgery happened sooner than we had expected.  Laundry is always going, and Nathan is still getting loads in and switched over and out again, and then I put it away as I can, which is better some days than others.  The back porch still has egg-toss-contest ponchos scattered all over, because the kids still play with them, but it means it looks a mess and I can’t bend over to pick them up to throw them out.

We are a mess, I think!

But we are alive, and some days that’s all that matters.

I am alive, and that is enough.

Being able to walk across the floor without sticking to it is just a bonus, really.

Thank you Tammy Hansen, Kanna Martiel, Kristi Bray, Rosely Cooper, Emilie Vaclaw, and Sharon Bastings for enduring our mess and cleaning our house today while we were gone!  It helped so much, as did the little bag of treats you left.  Thank you!

Finally, I would like to point out that this means I was awake all day (well, after sleeping until eleven) for the first time in almost two weeks.  That’s some serious kudos for such a slacker!

My big goal tomorrow?  Putting away the gluten free spaghetti noodles!  If that goes well, then I might even match some socks.  It’s time to stop slacking and start healing, I am sure of it.