I made it through yesterday with only a small amount of bone pain. I took Ryan to see his Pediatrician just for a well-child care check up. By the time I got home, I was really wiped out. I must have overdone it. Last night I started having a lot of nausea again and a severe headache. The good news is that the anti-nausea medicine actually worked. :)

The best part of my day yesterday: fresh raspberries, the best whole wheat bread ever and a yummy dinner! Thanks, my sweet friends!

No Bone Pain, please

Yesterday was a rough day. The shots they give me to rebuild my white blood cell count cause severe bone pain, especially in my lower back. I've never had such severe pain in my life. Severe kidney infection, painful. Doesn't even compare. Back labor, painful. Doesn't even compare.

I tried taking pain pills last night, but they didn't seem to help. I just kept reminding myself that the effect of the shots should wear off by Monday.

So, today is Monday. Please, no bone pain.

Ryan's Follow Up Appointments with GI & Neurologist

Ryan had two doctors appointments today.

We first went to visit with the GI Specialists to follow up on his diet and weight gain. We met with the Physician's Assistant and the Dietitian. The appointment went well. Ryan weighed 20 pounds 14 ounces and is 30.25 inches long at 21 months. (Wow, he's 21 months today.) They were pleased to see that he was so alert and to hear that he has been much more communicative with smiles and sounds. They recommended we increase his tube feeds to 40 ml/hour and continue offering juice and some fruits by mouth. We will go back in for another follow up visit in 3 months.

Our next appointment was with our favorite pediatrics neurologist. The appointment was at 10 am and I had marked off the day since we normally have a 4-6 hour wait before even getting into the exam room. I was pleasantly surprised when I arrived with my DVD player & headset, books & knitting that there were only 2 people ahead of us. The most surprising part was that the doctor wasn't even an hour behind, according to the appointment times. Whewhoo!

We had a nice conversation with Dr. Seals. I reported the concerns, specifically Ryan's increase from 1-2 myoclonic seizures each day to 20-30 sporadic myoclonic seizures each day. We also talked about the fact that he is really not using his right arm much and he's keep it stiff and pronated behind him. We also talked about the way he is flexing his little legs after therapy and not allowing them to relax again. I also reported about our visit to Dr. James Gibson, the metabolic geneticist that we saw earlier this month and gave him a list of the tests that Dr. Gibson ordered. He knows Dr. Gibson and was very complimentary of him.

After asking questions and taking notes, Dr. Seals has ordered another brief EEG on Ryan for next week with blood levels to be done the same day. I asked the reason we're doing another brief EEG as we had previously discussed at some point doing a 24 hour video-monitored EEG. Dr. Seals explained that for a child Ryan's age, he will get a lot of "noise" on the EEG that is caused by movement. He also explained that he doesn't really need an event to happen during the EEG. What he is most interested in seeing is the pattern of electrical activity, and comparing the pattern to the previous EEG's.

We are going to hold his medicines at the same level until the evening after his EEG. Then we will increase his Lamictal to 2 tablets (50 mg) twice per day. We will go back in for a follow up appointment with Dr. Seals in 3 weeks. That will give him time to have EEG results and also time for the increased medicine dosage to have an effect.

Since I had planned on being at the dr's all day, I had farmed out all the children. Most of the children went to our friend, Mary's house. (We all love that family! And, I think my children would move in with them permanently, if allowed.) Thanks, Mary! Johnathon was able to have a special date with Nana. They had lunch at his favorite restaurant followed by a round of miniature golf followed by a movie. He was SO happy this evening! Thanks Nana for making his day so special! I think it was just what he needed!

The nice part for me was that I was home much earlier than I expected. I think it was just a little after noon. The house was so quiet. Ryan and I snuggled up in my bed and just spent the afternoon resting. He is a very empathetic child. So unfortunately when I'm not feeling very well, he seems to pick up on it and gets fussy. But, every time it happens, once I pick him up and just lay him right next to me, he's fine. I believe he just needs to feel me to know that I'm okay. It really is rather nice in a way. How many 21 month old boys have you known that make such good snugglers?

I went in for my shot this morning around noon. (Did you know it doesn't hurt too bad to get a shot in your stomach?)* I was pretty red when I got to the office, but I still didn't have a fever. Since I wasn't running a fever, we're going to stay on schedule for chemo #4 followed by a biopsy. So, once again, prayers were answered. Thank you all!

*Whenever I think of shots in the stomach, I recall the night I was giving Joyce a shot in her stomach. She was pregnant with Jason at the time. I was like 13 or 14 years old and really nervous about the needle hitting the baby and hurting him. Joyce assured me over and over again that it wouldn't. So, I did it. I stuck the needle in and just as I did, Jason kicked his mom so hard that I can still see his little foot print on her belly right by the needle. It was horrific! I could never do it again.

I made it through the night without a fever. My stomach felt awful all night. Finally I gave in around 1.30 and took an anti-nausea medicine. Then 30 minutes later, I started vomiting. Seriously, aren't anti-nausea meds supposed to prevent vomiting, not cause it? Does that seem unreasonable to you?

I finally was able to rest starting around 4.30 and woke up around 7.30 to Deborah yelling, "Mommy, where are you?" She was panicked. It was very abnormal behavior for Deborah. Usually she just comes to my door each morning and knocks. She likes to come into my bathroom to go potty each morning. After I realized that her panicked little voice was calling out for me from farther and farther away, I went to the balcony and called back to her. She cried out to me, "Mommy, I don't want you to leave!" She kept repeating herself over and over again. I told her that I was still in bed and I wasn't leaving. I finally convinced her to come upstairs. So, she finally came up and snuggled into bed with me. I explained that I have to go to the doctors today, but that I won't be gone very long. I also told her about Nana's plans to do some fun things with her. But, what she seemed to need the most was just to snuggle with me. About 30 minutes later, she was done and off and running happily around the house.

When she got up, I went into the bathroom and noticed, dang it! I'm dark red all over. I don't feel yucky like I did after the last round of chemo. Mom says I'm running a fever, but since I've been drinking a cold shake, I can't take my temperature right now. Ugh. So, is it really a reaction to the chemo, or could it be a reaction to the so-effective anti-nausea meds?

I go back to the dr's office this morning to get my shot. It'll be interesting to see what he has to say about this. Blasted it! I thought we were going to get through this chemo without a weird reaction. I'll keep you all posted.

Chemo #3

Chemo #3 was this morning. I went to the treatment center, and my Oncologist insisted on seeing my blood labs before letting them start my chemo. Thankfully, my white blood cell count was just above the bare minimum. Just enough to go ahead with treatments today. (Tomorrow I have to go in for a shot of Neulasta, to rebuild my white blood cells, which seem to always take a beating from this chemo regiment.)

They were able to easily access the medi-port, and although it doesn't feel good, it's SO much better than getting an IV, and especially better than 3-4 sticks for an IV.

The drugs went in without any reactions. They doubled my steroid dosage today in hopes of preventing a repeat of last chemo's reaction. You might remember that I ran a high fever, turned dark red, and felt pretty miserable after chemo #2. They were unable to find any trace of infection and so it was either viral or random or a hypersensitive drug reaction.

I'm praying that I don't have a hypersensitive drug reaction this time as it means we have to re-evaluate what we're doing. I know this treatment will work. We just need to stick with it. I need the doctor to have enough faith to stick with it. Today when he came to see me, I thought, "Oh, no. He's changed his mind." But, he said he wanted to go ahead and hope that it doesn't happen. How about if pray instead of just hoping it will happen? I think the combination will be much more powerful.

True to the past experiences, almost exactly 6 hours after chemo, the headache hit and about an hour ago the nausea hit. I'm trying to make it through the night without taking any anti-nausea meds cause I just don't want to risk any kind of reaction. The simpler, the better, right? I don't know if I'll make it.

I'm so thankful for the opportunity to be refined. You know, I need a lot of refining! I'm thankful that He cares enough about me, and that He sees enough worth in me to teach and mold me. I can't imagine a better teacher than the Master, Himself.

Thanks for all your prayers! I truly feel the lifting power of the prayers. I really don't know how my family and I would have done this without so many amazing people in our lives. The prayers, the food, the words of encouragement, the food, the blessings, the help with kids, the help with the house. Sometimes, I think, "Oh, this cancer thing isn't so bad." Then I realize that it is only because I am not bearing the burden alone. I could not bear this burden alone, especially not with the others I carry. But, with all of you, and with the Savior's unyielding strength, I can do ALL things.

I can't wait till all this settles so that I can see the needs and be the one to step up to help. If I serve every day of my life, I'm not sure that I will ever be able to repay the incredible debt I have to all of you. And, I know that I will never be able to repay the debt I have to my Savior.

Know what's great about Cancer & Chemotherapy?

Do you know what's great about having Cancer and going through Chemotherapy?

I do.

Let me see if I can explain ...

For years I had a lot of pain in my joints. It hurt to walk. It hurt to climb stairs. It hurt to hold my arm up to blow dry my hair. It hurt to do a lot of things. Then the doctors found a way to finally put it in remission. And, I can remember feeling such exceeding joy one day at the realization that I was running up the stairs with NO pain! None. All day ... in fact ... for months of being in remission, I felt joy ... real JOY every time I moved. It was so amazing to just have no pain. I felt blessed. I felt so thankful. I felt so happy.

So, this morning I was thinking about what a blessing it is to go through chemotherapy. When I'm done with chemotherapy and my body has recovered, I will feel great joy at having the energy to do ALL that I need to do for the day. And, I'll feel great joy at being able to taste food and enjoy it every day ... not just a few days of each month. And, I'll feel great joy when I have to blow dry my hair again. I think I might even feel joy when the alarm goes off cause it'll be great to wake up feeling refreshed again. Yes, even chemotherapy can be a blessing.


Oh, but, I am human ... and geez! I can't wait to get to the other side of this chemo stuff and to feel joy about things I have taken for granted for so many years.

I wonder what else I take for granted?

What do you take for granted?

I have been trying to get caught back up on things that have been piling up: school stuff, paper work, scouting stuff, etc. I was able to get through most of the paperwork yesterday.

Today while David and I were writing out his goals for his Faith in God award and Boy Scouts, we heard Deborah talking just outside my bedroom door about "fixing her birthday cake." After about an hour, she came bounding through the bedroom door excited to show us her "birthday cake."

Isn't it beautiful?

WEIRD!

Okay last night ... that was a really weird sensation! When I first laid my bald head down on the pillow it just felt wrong. It's just the strangest sensation. And, it's cold too! I tried putting on one of Dwight's sweatshirts with a hood, but that felt odd too. I think I'll go buy myself a soft sleep cap today.

What I know...

Tonight I taught interviewing skills at our weekly employment workshop. I love the workshops. I love the candidates and the other specialists! It really is a treat to be there each Thursday evening.

As I drove home tonight I was thinking of some of the concepts that we discussed. The 2 that really stuck out in my mind are:
1) It's all attitude.
2) Let your light shine.

Let's talk about attitude. In an interview, an arrogant attitude will land you no offer and a shy, bashful attitude will not help you either. However, a confident attitude goes a long way in making a good impression.

It's also true about life. I bet you've noticed that, too. What I can testify of today, that I might not have been able to do before, is that attitude also helps you in adversity. What I know, without any doubt at all, is that God will work every trial, every irritation, every adversity, every weakness to your good ... IF you will allow Him. AND ... IF you will, you will see his tender mercies all around you. I know without a doubt that you will. It's all about the attitude.

(Please know that I am not saying that the road will not be hard or long. I just KNOW that He will not leave you comfortless. I know it.)

And, #2 ... Let your light shine!!!

I frequently see candidates who really don't know how to speak of their talents and/or accomplishments. Often they want to tell the mock interviewer all the reasons they aren't the perfect candidate for the job. This always brings to mind the following scripture:

"Therefore, let your light so shine before men
that they may see your good works
and
glorify your Father which is in Heaven."
~Matthew 5:16

You probably remember this chapter. The Savior is speaking to his Disciples. He preaches what is usually referred to now as the "Sermon on the Mount." Remember, "Blessed are the ___; for they shall ____." It's a great chapter. I love the part about the salt. In our day it seems a little odd to say, "Ye are the salt of the earth." But, when you think about salt and it's significance, it really brings a whole new meaning to this chapter. (I'm off on a tangent. I will bring it back, I promise. But, you should check out this article on the significance of that statement. What is salt really? Great article.)

Anyway... back to Let your light shine!

Can you bring people to Christ if you won't communicate with them? No. Can you bring people to Christ if you have no confidence? No. Where did your talents come from? (And, yes, YOU DO have them!) from HIM! Let your light shine! The interview is the place to communicate your strengths. You don't need to be boastful or prideful. Just share them.

Come to think of it... an interview isn't the only place to do it. Sometimes I'm amazed at the talents my friends have. Friends that I've known for years. Why haven't you shared your talent before? Do not hide that which God so lovingly gave you.

That's what I know.

PS... I haven't met anyone yet who doesn't have talents. And, yes, I meant to say talentS.

And, it's GONE...

Monday night you probably remember that we did a "Going, Going, and (almost) Gone" edition of Family Home Evening. Well, today my dear friend, Michelle, came up to remove the (almost).

Monday night as Jessica was cutting my hair, Deborah looked up at me and said, "Don't you want your hair, Momma?" Oh, so sweet. The little lady just melts my heart.
I wasn't sure what she'd think about today's session, but she came in the room while Michelle was shaving my head. So I asked her what she thought about it. She looked at my hair for a minute and then happily responded, "Awesome!"
I wasn't sure what I'd think about it. I thought I'd be fine with it, but the other night was a little shocking. It wasn't my hair that I was feeling anything about it, but I obviously felt something. While I was talking with Jessica later that evening, we both agreed that it was more the reality of cancer that we both felt a little sad about that evening. The hair will grow back. (And, yes, my dear Johnathon, my friends will still love me without my hair.) But, the reality is I really do have cancer and it really does stink having cancer.

So, how do I feel today? I feel relieved.


I'm so thankful to have such a huge support system! I can't imagine doing this without you all. Thank you for sharing in my journey!

And, Michelle, thank you again for being willing to do this sweet act of service for me!

I know you're anxious to see pics of the big hair cutting session. Unfortunately though I've had a weird response to this week's chemo. I'm bright red, running high fevers, and feel quite miserable. Thankfully, this will pass, right?

I promise to get the pictures blogged soon. Thank you all for your prayers and support!

Papa and Ryan

Papa (my Dad) has been visiting since Tuesday and will be here till Friday. It has been so nice to have him here and he has been so helpful! We sure love and appreciate him!

New Pics of the Medi-Port

The bandages were causing my skin to get really itchy, red, and even raw. So, tonight I took everything but the steri-strips off. Here's what it looks like... (please excuse the neck wrinkles) ... I couldn't decide which was the best picture so you get to see them all ... except for the one that made me look like I had a LOT of neck wrinkles ... I deleted it.

Hair

This morning as I brushed my hair it just kept falling out ... more and more ... and more. The picture doesn't even do justice for just how much came out. This is just the stuff that I put in the sink. There's still a bunch on the floor too. Then I got in Dwight's truck and more fell out. (I tried to gather all the hairs out of your truck. Sorry, sweetheart, if I left some behind. I suspect we may find them every where for a while.)

It is continuing to fall out today. I still have a lot of hair, but it is obviously thinner today than it was last week. Good thing it's just hair. Can you imagine if they were fingers or toes or arms? Oh, my!

Medi-Port is in place ... whew!

I went to the hospital this morning and after 2 sticks and a blown vein they were able to at least get blood to send to the lab. The wait to get the results seemed to take an eternity. Eventually, the numbers came back and they were good! (Actually, my white blood cell count skyrocketed above where it needed to be.)

So, Richard the nurse came over to do get my IV in place. I have to admit I was dreading being stuck more. So, when he started I said a prayer for him. Then I felt the stick of the needle, and then it felt like he took the needle out. I looked down fully anticipating seeing him holding gauze over my hand and looking for another vein. Instead he had the IV already in place, threaded and everything! I was so thankful! It was the least painful IV I have ever had!
Once they got the IV in place, it was about another 30-45 minutes before they took me back to the procedure room. They gave me "conscience sedation" or "moderate sedation." I remember talking to them for a while after they gave me the first dose, and then they gave me a second dose. I then remember asking him if he just cut my skin, he said yes and then asked them to give me a 3rd dose. Needless-to-say, I don't remember anything until a couple of hours later.

The port is in place. I had been told that the scar would be low enough on my chest that no one would be able to see it. What do you think?
I suspect, everyone is going to be able to see it ... unless I wear a turtleneck all the time.

PS I can't take the bandages off till Monday.

Neupogen is not my friend!

The shots they have given me over the last 2 days to rebuild my blood are a drug called Neupogen. I'm hopeful they did their job and my blood count will be back to (or at least close to) normal so that they can do the Medi-Port. When I asked what side effects they had, the reply was flu-like symptoms, but not everyone gets them. They failed to mention that one of their major side effects that people sometimes get is severe bone pain. Oh, my goodness! The only other time I've ever experienced such pain was when I had back labor with Jacob's delivery. It was excruciating! I felt like such a whimp! So, I'm off to the hospital soon and very, very hopeful that we'll get this port placed today.

Oh, and I had another large handful of hair on my pillow today. It's a good thing I have so much!

I'll keep you posted.

Today's Medi-Port Procedure Delayed

I went to the hospital this morning at 7 to get the medi-port placed. Nurse Amy was able to get the IV placed after only 1 failed attempt ... so 2 pokes. They took some blood and while we waited to hear back from the lab, the nice nurse, Stephanie, showed me a medi-port and explained the procedure.

I heard some hushed tones at the nurses desks and phone calls being made. I thought I heard my name and my oncologist's name. So I waited anxiously. Sure enough a few minutes later the nurse came over to explain that my white blood cells have taken a nose dive. Apparently, I have "neutropena" which is not uncommon with the type of chemotherapy drugs I am taking. The dr came in to talk with me and explained the change in plans.

So, I went back to the dr's office to get a shot. Matt gave it to me in my stomach, and it really didn't hurt. It can cause flu like symptoms, but not everyone gets them. Hopefully, I'll be one of the lucky ones. Matt will repeat the shot again tomorrow as it should help my bone marrow to build some extra white blood cells.

Then on Friday I'll go back to the hospital. They will retake blood and look at my count. If it's all good, then we'll do the medi-port that day. If not, then I'll have 3 more consecutive days of shots and then we'll do the port on Monday followed by chemo on Tuesday.

So, pray that my bone marrow cooperates and starts creating sufficient white blood cells. I'd like to have at least a few days to heal before they start pumping drugs into the port.

Oh, and one more thing ... I woke up to a bunch of hair on my pillow ... hair that was no longer attached to my head. (Did I tell you that I lost 2 large handfuls on Saturday night.)
Anyway ... it's a good thick I have a lot of hair. I noticed that I'm a little thinner in front and on my left side, but I don't think anyone else would even notice it. I think it's odd that I lost hair last night cause my head had finally stopped hurting. So, who knows. Maybe the next time you see me I'll be sporting the newest fashion ... bald. hahaha.

A Great Quote

One of my friends from my childhood, Sara, shared this quote with me. Read it a couple of times. It's really great!

And in the sweetness of friendship
let there be laughter,
and sharing of pleasure,
For in the dew of little things
the heart finds it's morning
and is refreshed.
~Kahlil Gibran

How Firm a Foundation

Last night, Jessica and I attended the General Young Women's Conference of the Church of Jesus Christ of Latter Day Saints. It was a very nice evening. The President and her 2 Counselors spoke to the Young Women of values that will help them to successfully navigate their youth, and their future. Additionally, the 1st Counselor in the Church's General Presidency who is also an Apostle, Elder Dieter Uchtdorf, also spoke to the Young Women about the way to a "Happily Ever After."

The last song that the choir and congregation sang was "How Firm a Foundation." If your not familiar with this beautiful hymn, you can click on the link above and hear the Mormon Tabernacle, an amazing choir, sing it.

This is one of my favorite hymns. I find the words to be very inspiring and often feel as if the Savior is talking to me directly during the last verse. I also feel like this should be the hymn for every brave man and woman who fight to defend freedom. I always think of this hymn when I see pictures from the war fronts.

In case, you don't know the words, I wanted to share them with you.

How firm a foundation, ye Saints of the Lord,
is laid for your faith in his excellent word!
What more can he say than to you he hath said,
Who unto the Savior for refuge have fled?

In ev-'ry condition in sickness, in health,
In poverty's vale or abounding in wealth,
At home or abroad, on the land or the sea
As thy days may demand so thy succor shall be.

Fear not, I am with thee; oh, be not dismayed,
For I am thy God and will still give thee aid.
I'll strngthen thee, help thee, and cause thee to stand,
Upheld by my righteous, omnipotent hand.

When through the deep waters I call thee to go,
The rivers of sorrow shall not thee o'erflow,
For I will be with thee, thy troubles to bless,
And sanctify thee thy deepest distress.

When through fiery trials thy pathways shall lie,
My grace, all sufficient, shall be thy supply.
The flame shall not hurt thee; I only design
Thy dross to consume and thy gold to refine.

The soul that on Jesus hath leaned for repose
I will not, I cannot, desert to his foes;
That soul, through all hell should endeavor to shake,
I'll never, no never, no never forsake!

Beautiful, right?

These words were, of course, inspired by scriptures.

The Lord's words to Isaiah, which apply to each of us:

"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. " ~Isaiah 41:10

"When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.
"For I am the Lord thy God, the Holy One of Israel, thy Saviour: I gave Egypt for thy ransom, Ethiopia and Seba for thee.
"Since thou wast precious in my sight, thou hast been honourable, and I have loved thee: therefore will I give men for thee, and people for thy life.
"Fear not: for I am with thee...." ~Isaiah 43:2-5