Well, after making a decision and being 100% prepared to defend it to anyone, I got an email from Dr. H.  I could cut and paste it here, but I think I'm just going to give you an interpretation.

I sent him an email reminding him that we had discussed taking me off of OxyContin and putting me on a pain patch. His reply left me reeling.  He said that he was going to put me on the pain patch, and that I could pick up the prescription on Friday when I come in for my Arenesp shot (more on that in a bit).  But he said that my level of pain had him concerned.  And that he had been doing a lot of thinking and researching in the 2 weeks since he saw me.  There is not much research on what works with the type of cancer that I have.  The type I have is fairly rare, so he's having to piece together the best information he can find.

All that to say that he has changed his mind.  Because I'm young, and because the tumor should be "on it's heels" after radiation and chemo, he wants to knock it flat with 3 or 4 rounds of chemotherapy.  And he wants to do it right away.  He said that he's trying to come up with the best possible way for me to have long-term survival (5 years or more), and his gut is telling him that this is the best way.

Paul and I are praying over it, and we're going to meet formally with Dr. H next week.  But because I trust my doctor, I think I will probably follow his lead.  Which may mean that chemo starts really soon.  I'm going to ask him to start it on 4/19.  I sing in chapel on 4/18, and Ciera's play is 4/11-14.  I just want to feel good for those things.  The only thing that having chemo on 4/19 would interfere with would be that my Grandmamma is coming on 4/20 for the weekend.  But she will understand if I'm laid up on Saturday when she comes down here to see us.

The Arenesp thing... I emailed Dr. H on Tuesday morning at his request.  I reminded him of something he wanted reminded of, and let him know that I had gotten my blood drawn on Monday, so the results should be in his computer.  He responded that my INR was great (we were tweaking my Coumadin), but that I'm still anemic, with hemoglobin at 9.7.  After 3 blood transfusions and an iron infusion, I'm still anemic.  And that ticks Dr H off.  He's getting impatient.  So, starting tomorrow, I'm getting Arenesp injections every 2 weeks.  It's supposed to kick my bone marrow into high production.  Hopefully after a month or so, I'll not be anemic anymore.

Being anemic is probably why I'm so tired in the afternoons and evenings.  Once we get that under control, it's possible I'll have more energy.  Today, I needed a nap after work.  The truth is that right now, with the weather being beautiful, it's OK to take a nap from 4:30-5:30 or 6:00.  The kids come home from school and play outside for a long while.  So, by the time they're in the house, I'm awake and a bit more alert.

Ciera will be part of Pygmalion at her school next Wednesday through Saturday.  If you live near Colorado Springs and want to attend, email me, and I'll tell you how to get tickets.

Today, I went digging.  Before I die, I want to take my family to Walt Disney World.  I wrote to them asking if they ever consider wishes from adults with life-threatening illness.  They linked me to a couple of organizations who grant wishes to adults. Every one of them will accept applications from adults who are in their last year or two of life.  1. I don't want to know if the docs think I won't live more than a year or two, and 2. I'll bet that in my last year of life, I won't feel like taking a vacation to Walt Disney World.  I was so hoping that we would be able to do it.

I priced it, and we can get a cabin at Ft. Wilderness, park hopper passes and plane tickets for about $5100.  That's not bad, but we don't have $5100 right now.  I've saved the trip on disney.com, and maybe we'll try to do it.  The deposit now is $1750, and I could come up with that on a credit card.  It would be our Fall Break trip.  I would so love to surprise the kids and tell them that we're going to a cabin for the week, and with them expecting to go to Grand Lake, get on a plane to Florida.

It's just something that I have wanted to do for a long time, and now that I know that I may not be around into my children's adulthoods, I really want to make this memory with them.

One of the advantages of the cabins at Ft. Wilderness is that they have a full kitchen.  So we could actually pack one suitcase that's just food (I don't know how we'd go to the grocery store in Orlando), and have at least 2 meals a day at the cabin.  That would save us a bundle!!!

So.  I might do it.  I might make that reservation.  Part of the cost would be travel insurance in case I get too sick and can't go.  I just SOOOOO want to do this!!!!!!!!  This IS a memory I want my children to have after I'm gone.  I want them to remember it being fun, even though Mama was sick.  I just wish they had Make-a-wish for adults that granted wishes before you've been given a death sentence...

As promised, a photo blog, as this Mommy walks down memory lane....

These are in no particular order.

 So much for my promise to write yesterday.  I apologize.  The day got away from me, and I was exhausted by nightfall.

OK, general decisions have been made.  We have not yet heard from Swedish Hospital if my tumor had/has hormone receptors.  If it did/does, then there is no question.  I will begin Tamoxafen tx right away.

IF THERE ARE NO HORMONE RECEPTORS, Paul and I have prayerfully decided to wait to do treatment.  I will have a CT scan in 2 months.  If the cancer is growing, then we consider it our sign to start chemo.  However, if it is not growing, we will wait again.

The time we wait will be used to get me stronger, and hopefully to finally get control of my anemia.  I got an email from the doc today after having a CBC run yesterday, and I am STILL anemic.  So, he wants to start Aranesp shots soon.  I guess they kick my bone marrow into high production gear, and maybe we can finally get my hemoglobin up into the "normal" ranges.

I have to admit that I'm kind of glad that I'm still anemic.  Because I felt so great the 2 days after the iron infusion, and then whammo... felt like my old, draggy, tired self again.  After working a full day, I go home and just crash.  Seriously, I go home, use the bathroom, change into jammies, and climb into bed.  I "hold court" with each of my children for a while. They lay on Paul's side of the bed and chat, or dance around the foot of the bed if they're hyper and chat. Or, in Ciera's case, sit at the computer and chat with me while she's chatting online with her MySpace buddies.   I watch TV, and sometimes, the fam comes in to watch with me.  Sometimes, I go to the living room and sit in the easy chair for an hour or two.

Tomorrow, I have a 16-year-old.  I'm not sure how that happened, or why that happened, or if I can do anything to stop it. But I'm pretty sure that I can't.  Meleia and Paul want to plan a surprise party for her, so we'll probably plan that toward the end of the month when the play is over (it's next weekend).  For her big Sweet 16 gift, she really REALLY wants to go to Europe and stay with her friend Kendrick and his family for a few weeks.  The problem is that tickets to Europe this summer are very very spendy.  AND she has lost her passport.  I gave her until her birthday to find it.  If she doesn't, we can't even consider the trip.  In which case, she'll cry and pout.  She will have to pay for a great deal of this trip anyway, so I'm not sure she's up to that task.  If she can't go to Europe, we'll probably upgrade her cell phone and get her her own line.  She is supposed to pay for it if she wants her own, but perhaps $15/month (including 250 text messages) is a good birthday gift.  We also told her that we would paint the Jeep (her car), but since she won't be driving before she's 17, she thought that the Jeep painting would be a good 17th birthday present.  Way to wiggle, honey.

The girls had a grand time on their trip.  Pictures are here if you'd like to see them.

Here are a few for you to preview if you don't want to look at 120! 

First, my pretty girls on the trip home.

The house that they built with the team out in front.

And the pastor and his wife in front of their lovely new home.  Yes, they built a parsonage.  The pastor and his wife had been living in the church.  They plan to use half of the home as theirs, and use the other half to house people who do not have a place to stay or live for a while.

And in case I haven't posted this picture yet... I don't think I have...  My 16-year-old:

Yes, she's got the pouty, one-eyed thing going on.  But I don't think that there is a more gorgeous girl (inside and out) on the planet.  And I'm not biased one little bit!!!

Actually, it's verified by other people.  Ciera was nominated not once, but TWICE for the Mayor's top 100 teens.  I'll let you know if she's selected.  She cried when the nominations came to her school.  She couldn't believe that people thought she was that special.  In her words, "I'm just being ME."  She can't imagine doing anything differently than she does them now.  She wouldn't NOT step up to the plate and take on a lot of responsibility when I'm sick.  She wouldn't NOT go on mission trips, service projects, and just generally to care for others.  And she thinks that's normal.  If she only knew how abnormal she is...

Tomorrow, I'll do a photo filled blog that walks down memory lane a bit.  Thanks for indulging me!

Well, not quite, but they're in Colorado Springs, and by now, should be in our car and headed this way.  WOOHOO!!!!

It's been a busy week, and I haven't taken the time to post.  I promise to do a long post tomorrow and let you know what's up and what decisions have been made, etc.

My online friend, Susie, who lives in Scotland is doing her local Race for Life in the memory of a friend who lost her battle with cancer, and in honor of my current fight.  Visit her page, and if you're interested, give her a little support! http://www.raceforlifesponsorme.org/susiemck  Thanks, Susie!  It means a lot to me.

See the Spring Sale Flyer below!

To shop online go to http://www.ourlemongrassspa.com/evie

Try the new Juicy Pear Items!

Spring Blossom Gift Sets are only available through May 31st!  Great ideas for Mother's Day!

Canadian friends, I'm getting ready to place an order of my own.  If you would like to place an order, email me at evie.lemongrass@hotmail.com, and I will add your order to mine and ship it to you when it arrives at my house.

Today, I met with my medical oncologist to discuss the next steps in chemotherapy.

There are a lot of decisions that need to be made, and while I appreciate that all of you will have opinions, know that in the end, the decision has to be my own, and if I make a decision differently than you would have, please support me anyway.

Dr. H is asking the hospital where I had my surgery to take a new look at the cancerous mass that they removed.  If the cells have hormone receptors on the surface, his suggestion is that I start immediately on Tamoxifen.  Tamoxifen is a drug normally given for breast cancer, but if my cancer is hormone fed, then we need to block the hormone receptors.  This would cause the cancer cells to be incapable of growing, and in some cases kill the cells all together.

If my cancer cells have hormone receptors, this is my choice of therapies.

However, if the cells do not have hormone receptors, meaning that the cells are not fed by hormones, then I have a major decision to make.

We could go ahead and do chemotherapy, but there is no guarantee that it would work.  Chemotherapy is not going to cure my cancer.  Like Elizabeth Edwards, my cancer is treatable, but not curable.  There is metastatic disease in my hip bone, which is contributing to the pain I feel walking.

Dr. H's recommendation is that we wait.  In 2 or 3 months, we do another CT scan.  We see if the cancer has grown any.  Then we make a decision again to do Chemo or not to do Chemo.  If it has not grown, his recommendation is that we wait.

The chemo that he would be using on me is very tough. It would be a combination of Taxol and Carboplatin.  He believes that my quality of life would be so drastically negatively affected that it would not be worth it until we have no other choice.  The choice, however, is mine, and if I want to go ahead and try three rounds of chemo and then do another CT, I can do that.  He will completely support any decision that I make.

He believes that I might live years before the cancer grows again.  That perhaps radiation and chemo knocked it out enough to send it into remission.  There is a difference between remission and cured, however. 

Remission is the state of absence of disease activity in patients with known chronic illness. It is commonly used to refer to absence of active cancer.

Cure means that there is no more cancer period in my body.

I have the option of getting another opinion, but I believe that the docs in the cancer center are a great team and that they work well together.  I trust that they're doing what's best for me.  Dr. H said that I'm looking better and getting stronger.  That my color is good, my weight is good, and that he really doesn't want to make me sick again with no guarantee of a positive result.

So, if you could be praying over my decision making process, I would be most appreciative.  That God would make it ultimately clear what the best road is. 

Also, pray for my sweet girls.  They took off for Mexico yesterday, and were both so excited.  I hope that they have an amazingly wonderful trip!

Edit at the bottom:

This morning, I saw, Dr. P, my radiation oncologist.  After hearing from the staff how great I looked, and weighing in at a whopping 119 pounds, I was taken back to see Dr. P.  He had me lay down on the table and palpated my abdomen where the cancerous lymph nodes were.  He said that they are considerably smaller than they used to be!!!  Now, he still suspects that there is some disease there, but radiation did shrink the cancer.

I had my CT scan yesterday and felt like crapola after having to drink 100 mL of barium.  But today, I'm feeling much better.  The barium has made its way through my system so I'm not so growly anymore.

Spring break has started for Colton and Rohan!  It starts for the girls in about 2 hours.  The girls leave for their mission trip on Sunday.  The boys will have a fun-packed week going fishing and skiing with their Daddy.

So, I'm going to have a very good weekend not worrying about what Dr. H will say on Monday after getting the CT results.  Today is a good day.  I'm feeling good, and the lymph nodes are considerably smaller.

Yep, today is a good day...

That was 1000 mL of barium (yup, drank 3 and then had to drink a 4th at the exam).  And the disease is cancer.  He suspects that there is still cancer in there.  But that it has shrunk.

I know that a lot of you were concerned about the lack of a PET scan.  Here is Dr. H's response to the question "should we pay for a PET scan ourselves?"

Evie,

I got your message passed to be by Jill.  The reason that I opted not to fight the insurance company further for the PET scan is the possibility of a false positive result.  Radiation is going to continue to work for weeks beyond the last radiation fraction, and in talking to Dr. P, he recommends not doing a PET scan for 8-12 weeks after the last fraction of radiation.  The insurance companies take a more conservative approach by stretching this out to 120 days or just over 17 weeks.  If we were to do the scan now, there is a high likelihood that it would demonstrate uptake in the areas treated with RT.  We are looking for residual disease that survived the chemo/RT.  I would like to do the CT scan so that we have a baseline scan to compare to the original one you had in November.  Ultimately, I will be using CT scans to follow your response to treatment, as we will be more interested in assessing changes in size of any suspicious areas, rather than looking for complete resolution on PET scan as a determination of response to therapy.  I believe that we can use the PET scan intermittently to validate our response to therapy.  I don't feel compelled to use it up front and would rather reserve it for when I know we are going to get a good, unbiased scan.  I believe that the RT may cloud the issue and give us false positive results.  I am interested in seeing anatomically what is different now that you have gone through definitive RT with chemotherapy, comparing the pretreatment scan with a scan 4-5 months later (now).  I would specifically be looking for decrease in size and number of nodes.  Please let your mother know that getting a PET scan now will not have anything to do with or impact on your survival.  In my mind, the PET scan is not worth the hassle.  We can get plenty of information from the CT scan and utilize the PET scan later after we have done some chemotherapy, specifically to validate the findings on CT scan.  I hope that this makes sense.  I don't write good e-mails because I am so long winded.  Let me know if you have any other questions.

Insurance is holding firm.  And I agree with every one of you who commented on insurance companies who think that they know more than the doctors.  They suck, and they make me really really mad.

So now I'll have a CT scan at some point this week, and pray that it gives Dr. H the information that he needs to begin chemo.  I have to trust that God is in control of this, but it's very frustrating. 

OK, devotional for the day:

Genesis 12:1  The Lord had said to Abram, "Leave your country, your people and your father's household and go to the land I will show you."

Step By Step - by Kim Jones

When God gives us direction, he often only gives us the information one step at a time.  And we want the whole journey mapped out!  God gave me a real-life object lesson about this concept as a church camp counselor.  The kids were having the time of their lives and drawing closer to God, but every day the same problem emerged: Instead of just relaxing and enjoying the activity at hand, the kids would constantly ask, "What are we doing next?" "What are we doing tonight?" "What are we doing tomorrow?"

It was frustrating.  Their continual obsession with "What's coming next?" was robbing them of the joy of their present moment, the thrill of the immediate activity.

When Abraham left Ur, he didn't get a map or an itinerary from the Lord.  He didn't know what the future held or where God was leading him.  He simply set out at the Lord's command, trusting him to take care of each new day and each new circumstance.  It's the way of faith - and it's a lot less stressful!

I have an appointment with Dr. H. on Thursday!  But I was supposed to have a PET scan prior to that.  And so far, insurance won't approve it. *sigh*

So, what does that mean?  I guess I'll call the office tomorrow and find out if they still want to see me on Thursday, or if they want to wait.  Insurance says that they won't do a PET scan until I'm 4 months from radiation.  So I have to find out if Dr. H wants to wait for 4 months to do chemo, or if we're going to start it before the PET scan.  Blech.

I'm also going to see Dr. P for my radiation followup and the other Dr. P for my peg tube followup.  Lots of doctors after having a break for a few weeks.  Oh well.  It was nice to have a break for a few weeks.

Colton and Rohan are both still sick.  It's a virus, and it's nasty.  Both of them have been puking and running high fevers.  Paul doesn't want me caring for them, obviously, because we don't want me to get sick.  But I still wake up every time they come in to see him.  On Friday, I told Michael, my boss, that I needed to go home around 1:30 and take a nap for an hour or so and then I'd finish the day from there.  I slept until 6:00 pm!!!  So, I worked for a few hours yesterday to make up my naptime.  But good grief.  I didn't think the boys had kept me awake that much!

The girls and I made a Goodwill run yesterday to get clothes for their mission trip.  They leave a week from today.  WOW!  But, anyway, they needed clothes that they could do construction in without messing them up, so $45 later at Goodwill, and they've got shoes, jeans, and shirts to wear out as they build a house.  I got a sweet email from the Middle School Pastor this last week promising to take care of my girls as though they were his own.  I know that he'll take care of all of the kids that way, but it was nice to have him single out my girlies.  They're very excited about the trip.  We have a few more things to buy.  Sunscreen, one more sleeping bag, a solar shower if we can find one.  But otherwise, they're ready!

Have a great week!