Saturday, October 31, 2009

Happy Halloween!

I think this has been our best Halloween ever!
Last weekend we went to a Trunk or Treat party at our church. Jessica took two of her good friends with her. I think it was THE best Halloween party we've ever attended! The food was good. The games were fun, and there were plenty of treats. The kids spent a lot of time preparing their costumes, and Dwight helped them by doing incredible makeup jobs. They all looked awesome!David even won the Scariest Costume award. His makeup was creepy!
The down side to that great (early) Halloween Party is that Dwight and I really didn't want to go through all the dress up stuff again tonight. We also didn't really see the point in going trick or treating when the kids have more candy than they'll eat for the rest of the year. We told the kids this "bad news" last weekend but I expected all the kids to be a bit mopey today.
But, Dwight saved the day!

First, he took me to lunch and to see the movie "Up". It was a great date. Then we came home and made a super delicious cheese fondue and a really yummy chocolate fondue. It was all Dwight's idea. He also picked a movie that he knew all the kids would really enjoy. The kids took turns answering the door tonight and handing out treats with Dwight and me.

About half way through the chocolate fondue, Jacob -- the one I expected to be grumpiest about the decision to not go trick or treating -- exclaimed, "This is the best Halloween ever!" All the kids quickly agreed. And, I agree! This has been the BEST Halloween ever! Thanks, Dwight, for being so thoughtful and making this such a great day!Hope you all also had a Happy Halloween!

Friday, October 30, 2009

The Full Scoop

Well, the word has started to spread so I think I'll just come clean and tell you all the full scoop. No, I'm not pregnant again. Whew! Right?

Earlier this year, I scheduled an appointment to see my dermatologist. I wanted to get some prescription strength lotion to get rid of the eczema I had on the back of my neck. The night before my appointment, I mentioned to Dwight that I was going in the morning and he said, "You should have him look at that spot on your face." I didn't even know what spot he was talking about. So, he pointed out that I have a little rough spot right about where my glasses sit on the nose bridge. "Sure, Sweetheart, I'll have him check it out." So I did.

As some of you may know, the dermatologist determined that it was a spot of Actinic Keratoses (AK) on my face. (AK is considered the earliest stage in the development of skin cancer.) So, they gave me some medication to put on it twice a week and scheduled an appointment at the end of summer to follow up.

On October 8th, I went back in for the follow up visit. The nurse handed me a gown. I politely explained that the spot was on my face and I didn't think I needed to put on the gown. She said that it was just standard practice during follow up visits for the dermatologist to look over all the skin. Okay. Fine. Whatever.

While he was looking at my back he noticed, again, the half a dozen plus lumps I have on my back. He confirmed with his notes that we had biopsied one before and that it was just related to my lupus. That one had come back as "inflammatory cells." But, then he decided to biopsy another one. Okay. He did and then instructed me to come back in two weeks to have the stitches removed.

He also noticed some of the other weird skin things I have going on at times, and asked if I had any muscle weakness. Well, sure I have Lupus ... I have good days and bad days. I have days when workouts seem much too easy, and other days when I can barely get through the workout with my own body weight. He then suggested I see my Rheumatologist and talk to him about determining if I have dermatomyositis.

On October 20th, I wrote in my journal: "While I was conversing with the ladies at co-op today, I received a call from the nurse at the dermatologists office. The biopsy results showed "inflammatory cells with atypical appearance." They are sending it to another lab for further review. They don't know how long it will be before the results are back. I felt like someone had just pulled the rug out from under me. I was expecting it to be a lupus lump or some symptom of the newly suspected diagnosis, dermatomyositis. I wasn't expecting anything different."

Then on Thursday, October 22nd, at 2.30 pm the dermatologist office called to confirm my appointment. I hung up with them and decided to take a nap. At around 4 pm, the dermatologist office called back and his nurse asked me to hold to speak to the Dermatologist.

I recorded in my journal: "The nurse from the dermatologist office called. She asked if I could hold to speak with Dr. Dotson. Hmmm... it's never a good sign when the dr wants to speak directly to you. He started with some nicities. Then said, we need to do additional immuno something studies. He thinks this is a lymphoma. This lump is denser of the lymphocytes than the previous biopsy. There is definitely atypical infiltrate, and they think I have marginal cell lymphoma. He will be contacting a hemotologist oncologist for blood work. He will also contact Dr. Kempf to see if he can get me in early than 2 weeks from now. I don't even know what to think. I don't want to tell Dwight. He already has a pretty full plate."

The next morning I went in to meet with the Dermatologist and to have my stitches removed. Later that afternoon I recorded in my journal, "I went to see my dermatologist this morning. It's not good when a doctor walks in the room looking compassionate, and offering apologies and compassion. Hmmm... I immediately sensed that this wasn't just a "we think this is cancer and we need to get further tests." I was right. The official diagnosis, with 4 doctors concurring is that I have lymphoma. Okay. I can do this. Just another marathon. We talked about the lumps. He feels bad that we didn't catch this 6 years ago. We had biopsied one of the lumps. It didn't seem necessary to biopsy each of the lumps. Plus, lupus seemed to explain all of the symptoms and the steroids gave me some relief. Dr. Dotson told me about the doctors that did the pathology reports, the doctor who is doing the immunophenotyping and characterization, and the hematologist oncologist that he wants me to see. Am I really being referred to an oncologist? This just seems unreal."

During the appointment, the dermatologist explained that he had reviewed the case with 2 other doctors who concurred that this is a Lymphoma, probably a cutaneous B-cell marginal zone lymphoma. So... next stop the oncologist.

I realized Friday night that I really process a lot by writing about it ... more specifically by blogging about it. I also felt impressed that I should be open and willing to openly share this new challenge. So, from here you'll read the blogs that I wrote but didn't publish before now. I hope you'll understand that I'm not going to filter my writing for a while. I want to be honest about what I feel ... right or wrong. This is a little hard for me as I don't really like to show my weaknesses. I imagine none of us do, but I will share this journey with you honestly and openly in hopes that you as a reader might find something that will bless your life. (I hope your challenges never seem too hard to bare, but I suspect that's not the Lord's plan.)

Speaking of challenges being too hard to bear ... just before I found out this whole thing, someone said to me, "The Lord never gives us more than we can bear." (or, would that be bare?) I've heard that lots of times. I bet you have too. Do you believe it? I don't. When I first started to realize that I don't believe that statement, I felt a little like I was being rebellious or denying the faith. I have sense come to realize what I do believe about that statement.

I believe that we ARE at times given more than we can bare. I believe that the Lord blesses us with more so that we will get down on our knees, so that he can sanctify us, purify us and qualify us for the His glory. I also believe that in doing so He will never leave us comfortless. He will always help to carry whatever "cross" he gives us, if we will just simply ask.

So back to the scoop ... Saturday night I didn't sleep much. At 3'ish a.m. I wrote, "I've been awake for about an hour now. I'm scared. It seems I'll probably have to get a bone marrow aspiration and biopsy done. I hope not though. It sounds just awful. I know how much it hurts to have a bone cut into. This is gonna be hard."

Sunday was an amazing day. We attended the Sunday session of Stake Conference and it was as if almost every message was prepared just for me. One talk in particular, Bro. Brooke's was inspired for me. It was as if Bro. Brooke's words were His words for me. Have you ever experienced that? I hope so.

After church, I received a Priesthood blessing. It was such a comfort. It was also so comforting to be able to openly share this challenge with our close friends the Miller's and to know that we were/are not alone. I appreciate our friendship with them so much!

Sunday afternoon I wrote a little more in my journal: "I've been handling all of this pretty cheerfully. It obviously has felt heavy, but today the sense of urgency to handle it and the sense of enormity of this event has become more real. Yet, it still feels too unreal to believe."

(The rest of this post are a combination of my current thoughts and writings from my journal.)

I do not nor have I thought that I might die from this. This type of Lymphoma is very treatable. It just sounds like it might not be very fun. I'm starting to think the treatments might not be as bad as the tests.

But hearing the word "cancer" makes one think about just how fragile mortality is. Oddly enough I had this experience about a month ago too while driving home. I was just driving when it really hit me just how fragile mortality is. No, I didn't think "I'm going to die soon." I just realized that any of us could be called home at any minute.

What if I did die ... from a car wreck, or choking, or some health issue. Am I prepared for that? Have I prepared my children enough? And, I know there is an eternity. I know life continues in the spiritual realm, but what does that really mean? What will I do there? Will I still be able to watch over my children? I know dying people tell their children that they will, but will I really be able to watch over them if I die. Geez, I hope I don't die soon for any reason. I have a HUGE to do list. Does God know that I have a lot to do still? I hope so.

In addition to my to-do list, I'm sure I'm not prepared well. There's so much that I need to be better at. I'm not as close to the Savior as I could be. I don't pray often enough. I don't study my scriptures daily. I try, but do I try hard enough?

I worry about how the children are going to deal with this. I'm especially worried for Dwight. I hope this will be his opportunity to really understand how much the Lord loves him.

Really -- what will it be like on the other side? Will there be beautiful beaches? Will there be cool fish to look at? Will I have time to dive? Wouldn't that be cool if I could dive and not have to worry about being attacked by a shark or about losing my oxygen. LOL! Okay ... obviously, a subject I should study more. Because I know there is more doctrinal knowledge of it than I have.

And, again ... I'm really don't think I'm going to die any time soon ... but hearing the word Cancer used as a diagnosis does really make one think about the fragile state of our mortality. And, it obviously made me very nervous cause here's what I wrote before going to the Oncologist on Tuesday:

"I feel like I can't breathe today. My heart is racing and I feel so short of breath. Perhaps this is what an anxiety attack feels like? I'm so nervous about today. I told Sis Hilton, my visiting teacher. I couldn't even hold back the tears. I can't say the words Lymphoma or Cancer without crying. HOw am I going to convince everyone that I'm going to be okay if I can't even say the words? I am going to be okay. There are just too many questions and not enough answers. I hope I get some answers today.

You know the one activity that has helped me to feel peace today is focusing on other people's needs. I worked on a couple of employment needs, and I felt at peace then. Good lesson for the future -- serve others to feel peace."

So, back to the scoop instead of my ramblings... the Oncologist, Dr. Ulmer said we need to get the tissue back from the lady who is currently looking at it. Dr. Ulmer doesn't feel entirely confident of her abilities and so once he gets the tissue back, he will probably send it off to the National Institute of Health (NIH) in Maryland.

He also said we need to find out how much is there and where it is. Then we will need to decide how to treat it. So on Tuesday they took a bunch of blood, then on Thursday I had a CT scan of my abdomen, pelvis, and chest with and without contrast. (I got to drink LOTS of barium. Yum.) Then on Monday I get to go for a Bone Marrow test. Luckily they are going to sedate me for it. Ewww.... that's the one that makes me most nervous.

The best case scenario is that the Lymphoma is just in the one lump. We can remove the lump and treat with radiation or possibly even just a topical treatment. The worst case scenario is that the Lymphoma has spread to my lymph nodes and/or bone marrow. In that case it could require chemotherapy. And, the worst part of that is actually the side effects of the chemo. So, hopefully, it'll just be contained to the one lump.

About an hour after I got home from the Oncologist's office, they called me back and said they need more blood to check my platelets.

Hopefully, all these results will be back within 2 weeks and we'll be able to make the necessary decisions.

On Wednesday, I went to see my Rheumatologist. He's a great guy. Dr. Dotson had already talked with him. So, we talked for a while and then he ordered MORE bloodwork to check my muscle enzymes. Apparently, there are times when Lupus morphs into dermatomyositis or polymyositis. It is also common to see dermatomyositis with Lymphoma. So, we'll see what my muscle enzymes show. If they are high, then I'll need to have a muscle biopsy and a nerve conduction test. Neither of those sound like fun. Hopefully, everyone is just over-reacting and I'm really just a big whimp. :)

I had my CT scan yesterday. It was fast. The contrast is sure a weird feeling. I could feel it spreading throughout my body. Crazy, weird.

I received a call today about my bone marrow biopsy on Monday. They are going to do "conscious sedation." Are you kidding? Would you want to be conscious???? What is wrong with these people? They ought to put me asleep! I mean really asleep. I don't want to hear or remember any of this.

So... that's my update. I'll keep you all posted!

Wednesday, October 28, 2009

I'm definitely feeling better today.

I am still waiting to hear back from the Neurologist regarding the MRI they did on Ryan on Thursday of last week. I wish he were a little faster at getting back to me.

A picture by Johnathon

My sweet Johnathon stuck this picture under my door today while I was saying my prayers.

Monday, October 26, 2009

I am SOOOO anxious. Too many questions and not enough answers. I think I'll go read for a while. I need some peace. Hopefully, I'll have more to post soon.

David's 11th Birthday

It's hard to believe that it's been 11 years since David joined our family. It's been quite an adventure!We have a family tradition of letting the kids pick where to eat for their birthday. David picked Genghis Grill, a family favorite.
With Jessica being in school, and me being a little ... what's the word? ... oh, stressed, we failed to get a cake made for David's birthday. So, we had dessert at Genghis also.
(Deborah really enjoyed hers!)

Dwight and I are sure glad we have David as part of our family and we're looking forward to many more great years! Love you, David!

David's Well Child Care Check Up

I took David for his 11 year old well child care check up. He is a healthy boy who weighs 78 pounds and is 57 1/4 inches. (Just another inch and he'll be taller than me.)

Sunday, October 25, 2009

A beautiful Sabbath

Today was a beautiful Sabbath, wasn't it?

Have you ever attended a meeting where you felt like everyone knew your heart and mind, and spoke directly to you? I had that feeling today. With one talk specifically, I felt very impressed that his words were specifically for me. It didn't surprise me then when after the meeting he said, "I had you in mind when I prepared my talk." Some time in the near future, I'll share some of my notes from his talk. I'm sure they apply to all of us.

Here's my new favorite scripture:
"I will not leave you comfortless; I will come to you." ~ John 14.18

And from a hymn:
"In every condition, in sickness and in health ... As thy days may demand so thy succor shall be."
~ How Firm a Foundation

Great, aren't they?