Wednesday, September 30, 2009

Bryan and I just returned from the infusion center. He needed another two units of blood. Last Tuesday, his hematocrit was 25 and we received two units last Wednesday, but internal bleeding continued throughout the week. Yesterday, his hematocrit was 21! No wonder he has been so tired and weak. He is feeling perky now and we hope the bleeding of unknown cause has come to an end, Lord willing.

His bilirubin level continues to come down, but it is still too high for him to receive the CPT-11. Thus, chemotherapy yesterday consisted of 5FU, Leukovorin, and Erbitux.

The last few days walking has been virtually impossible and we have made good use of the wheelchair. Today, he walked a fair distance through the hospital and back to the car, before and after his infusion. It's a miracle to me to see him so low and then perk back to almost "normal."

Last week's adjustment of the electrolytes in his TPN did the trick! His electrolyte levels are now normal which will help reduce or eliminate the blackouts.

Thank you for your faithful prayers! God is at work and we praise Him for each day, good or bad.

"...The Lord on high is mighty." Psalm 93:4

Saturday, September 26, 2009

It's Saturday Night, and Sunday's Comin'

After a couple of weeks break from Sunday morning worship, our plan is to attend church tomorrow morning. Tomorrow will make seven days without hiccups--a miracle in itself! Bryan is in bed, I hope to be there shortly. Looking forward to worshipping with our Pilgrim Family!

Thursday, September 24, 2009

No Longer A Quart Low

It is amazing to me the difference two units of blood has made in Bryan! The lightheadedness and blackouts have ended. His color is better. He was a bit peppier today and seemed to have more strength. We visited with his primary care doctor today who told us of a 93 year old patient who goes in for a top off every two to three weeks. He said, if necessary, he could put Bryan on that schedule. It is so nice working with pro-life doctors!

The hiccups are still gone! That alone is a great energy booster. He's looking forward to getting his strength back to be able to walk around the block and climb into the pulpit again soon!

Wednesday, September 23, 2009

A Parenthetical Day

Chemo was an okay day on Tuesday. Just as I predicted, Bryan's red count was low and the bilirubin high (although, down from last week!). He has been so fatigued with all the blood loss (which no one knows where it is coming from) and he is jaundiced. He had an alarming 6 pound weight gain, but before we can woohoo about it, we must acknowledge the edema he is experiencing in his extremities (arms, hands, feet and legs, oh and his face, too). Most likely his dry weight remains the same.

His hematocrit was 25.1, which was the ticket to get two units of blood this afternoon (in Tacoma, yeah!). After the transfusion, he feels much better. The lightheadedness is virtually gone and he has more pep. He stayed up and watched the children play a game (TABOO, that's the name of the game) this evening. Lately, he's been going to bed by 9:00 and I think he turned out his light about 11:00.

Praise number (1) (almost fearful to even mention it though) no more hiccups!!! The last hiccups I heard were Monday night. What a relief for Bryan to be set free from this plague. Waiting patiently for the deliverance from the cancer. We keep hoping the bleeding is dying tumors (they are very vascular!).

Praise number (2) Dr. Chen would like Bryan to challenge his ability to process food. We will be adding clear liquids and clamping his gastric drain to see if things process in the proper manner. This should help prevent his (continuing) dehydration.

Thanking God this evening for a husband who looks and feels better than before the camping trip. Looking forward to God restoring him to the energy level he had before the cancer.

I had better say good night (before I have to say good morning!)

Monday, September 21, 2009

Monday Evening

Bryan did not preach Sunday. He and I stayed home so he could rest following, what appeared to us, a large blood loss through his bile drain early Sunday morning. He ran a fever last night and this morning so we called the biliary doctor to see what's next. We made a quick trip to Swedish Hospital in Seattle where we waited over an hour to see a doctor for 10 minutes! He said everything was fine with the "plumbing" and offered no explanation of the blood loss, fever and the increasing yellowness of Bryan's skin. I am frustrated and yet thankful. It seems most of the doctors do not appreciate my line of questioning, that's my frustration, I want answers. We came home from Swedish without an overnight stay, that is my thanksgiving.

Tomorrow we see Dr. Chen and possibly receive a chemotherapy infusion. I say possibly because Bryan's color and fatigue indicate to me his blood counts will be too low and bilirubin too high to receive chemo. We are praying for a more encouraging day than last week. We were informed two of our acquaintances passed away last week. That is really tough to deal with because the other patients are part of the team. We all support and encourage one another.

Vivian was a fellow colon cancer patient with a deep love of the Lord. The last time we saw her she was so vibrant and alive and we prayed together and she strongly exhorted Bryan to hang in there with God. It was most definitely shocking news because she was so much healthier than Bryan. This shows man does not know the day or hour, but God has an appointed time for each of us to be born and to die.

Thanking God for the miracle of each day of life He gives to Bryan!! Thanking Him for the blessing each one of you are to us in walking this road with us. God bless and good-night!

Saturday, September 19, 2009

No News Means We Have Been Busy!

This past week we have canned peaches and pears (17 boxes of fruit). Mom spent the whole time running around to various dr. offices and I (David) peeled fruit for 12 hours straight(or something like that). Sarah didn't even feed me; Hannah and Daniel made lunch. Dinner was late and outside in the dark. We ate more fruit flies than food. Last night was the exception, because I grilled the salmon and Mom finally cut peaches for the fruit salsa! Music from the 1920's and 30's kept us going. Jonathan and I nicknamed one another, "Peachy Pants" and "Hot Syrup." They say when you are exhausted you get giddy, now I think I understand. We had a Ball!

Seriously folks, Dad continues to have internal bleeding problems which the doctors don't know what to do about. We hope that it is dying tumors. He has quite a bit of fluid retention. The fainting has reduced some and the blood pressure seems to be rising, thank God! The hiccups only bother him at night while "sleeping." Although he has a strong voice, he will not be preaching tomorrow because of fatigue. Through the trauma of the week, God has been faithful. We continue to call upon His name to bring healing to Dad.

That's all f0lks!

"Peachy Pants"

Wednesday, September 16, 2009

Blessed Be His Name

Yesterday at chemo was somewhat disappointing. I was down a pound in weight and the blood work showed an uptick in the bilirubin level. The week began with Susan's discovery of a bloody bile bag which is monitored at home. News of the bleed prompted Dr. Chen, on Tuesday, to contact Dr. Omdal, the doctor who originally placed the drain, to have a look, which he did today at Swedish. The problem proved to be a blood clot in the drain which Dr. Omdal replaced in a 45 minute procedure. I'm feeling fine today (Wednesday) thanks to a higher blood pressure that seems to be maintaining itself. I realize now that throughout this God is manifesting his comforting presence by giving while taking away at the same time. But blessed be His Name!


Monday, September 14, 2009

Tellin' It Like It Is...And It Is LONG, Sorry!

I recently received a phone call from a friend who lives out of state (out of country, to be exact) and he encouraged me to post regularly because he is not here able to see what's happening in our lives, so he is dependent on this blog to inform him. I assured him I would make a greater effort and I know there are many people in agreement with him.

Facing each day is a challenge for me. I really don't know what to expect. Before I open my eyes in the morning, I ask the Lord for grace and strength and mercy to endure the day set before me. I ask that He will guide me to be a helpmeet to my husband and a joyful mother to our children. I used to have a planned out daily schedule, but it seemed every time I would get it up and running the Lord would encourage me life was according to His plan and schedule, and not mine.

As a veteran homeschooler, I have purchased many books on organizing my time, attended conference sessions on managing my home and even considered an online program to help with lesson plans. Each time I get organized, something happens--not always a bad something--just something, like the need to paint the house, remodel the bathroom or go to the hospital for cancer or to have a baby. So, I quit trying to plan and have determined God will show me the direction I need to travel each day. This works pretty good. For example, I kept thinking I should clean out the frig/freezer in the kitchen, but there was always something more important which prevented this until the day after we came home from camping. When I walked into the kitchen that first morning, I found a brown, sticky fluid pooling on the floor in front of the fridge. The night before, someone decided to "cool" down a Pepsi quickly, forgot, the can exploded and they turned off the freezer to clean it out, decided it was late, went to bed, didn't turn the freezer back on and thus my gift first thing in the morning. A very successful method in getting the freezer cleaned out! I didn't get upset, because I did the same thing when I was about the same age, only it was an 8 pk of glass 7-up bottles evenly distributed among a recently purchased half a beef in my parents' freezer. My mother was reminded of this for an entire year as each package of meat removed for a meal was covered in shards of glass and sticky substance. All this to say that yesterday, while staying home from church because Bryan was not feeling well, I chose to write up a school/chore/meal plan for the new school year. (Kind of silly since we school year round, but anything for new motivation, right?)

I got up first thing this morning, woke the children and we were off to a great start. Sarah was making breakfast while chores were getting done and I went to check on Bryan. Part of my morning routine is giving him his meds and emptying his drain bags. What a surprise when I found a bile bag full of blood. My first thoughts went to that blasted schedule and what was I thinking that I could get organized when I needed to take care of my husband and his unpredictable needs! Then, I prayed. I don't know why I can never get that in the right order. One of these days, I pray, I will pray first then consider my options. Jonathan came on the scene, helped me recall all that happened at the hospital the last time we found this and so we applied hospital technique in our own home. It worked great and a phone call to the doctor assured me that things should be fine in a day or two. So, tomorrow we head off to chemo in the morning. We continued on with our schedule almost as planned and had a successful day.

Bryan looks and is tired and weak. He has lost most of his hair; a side effect of the CPT-11. He rarely speaks, only to request a glass of water or assistance in and out of bed, his chair or the bathroom. He doesn't get out of bed until after 11:00am, generally, and then attempts to read his Bible, but usually falls asleep with book opened on his lap. He often faints when standing and must have assistance at all times. His hiccups seem to only bother him at night, now, so it must be related to the position he sleeps. He can only sleep one way due to his drains and dressings. So far, his skin integrity is holding. He is so thin but is steadily gaining a pound or two each week. Last week, he weighed 104, that's good news and I hope for 106 tomorrow.

My prayer concerns for this week are the blood in the bag, the fainting, and the rising bilirubin. We got as low as 3.2, but last week it was back up to 7.0 and I think he looks jaundiced but once again everyone disagrees with me.

Telling it like it is--it ain't pretty, but through it all we still have hope. Not a hope due to denial, because the truth is pretty plain. But, "(t)his hope we have as an anchor of the soul, a hope both sure and steadfast..." Hebrews 6:19

Thank you for enduring with us in prayer and hope (and the long blog post)!

Friday, September 11, 2009

September 11- We Will Not Forget!

A very somber day of remembrance. We spent the early part of this day explaining the meaning of 9/11 to our three children born since that fateful day. Hannah had many questions, Grace kept hugging me as I silently wept while we replayed news video from 2001 and James just kept saying "me see it!" It is amazing how raw my emotions were as if it was happening all over again. May it never happen again!!! Let's not forget; we need to tell our children the importance of the second day of infamy for these United States of America.

As for Bryan, he is weak and tired. Last Tuesday, he had developed an infection at the biliary drain site. It was cultured and he began antibiotics. The culture came back negative so Dr. Chen had it re-cultured this Tuesday because there was still active infection after a week of medication. Today, we learned the culture was positive and the particular bacteria is resistant to the antibiotics he has been taking so we are switching to another one. Hopefully, the new antibiotic doesn't have low blood pressure as a side effect. He has been battling hypotension all week; blacking out almost every time he stands up. We try to go very slowly to change positions, but sometimes that doesn't even help. I hope defeating the infection will give him strength once again. He continues to endure the hiccups; often robbing him of sleep at night, but they do seem to be less frequent for which we are thankful.

He asked me to share a devotion we read from Streams in the Desert this afternoon. It was very encouraging to us.

And so, after he had patiently endured, he obtained the promise. Hebrews 6:15
Abraham was long tried, but he was richly rewarded. The Lord tried him by delaying to fulfill his promise. Satan tried him by temptation; men tried him by jealousy, distrust, and opposition; Sarah tried him by her peevishness. But he patiently endured. He did not question God's veracity, nor limit His power, nor doubt His faithfulness, nor grieve His love; but he bowed to divine sovereignty, submitted to infinite wisdom, and was silent under delays, waiting the Lord's time. And so, having patiently endured, he obtained the promise.
God's promises cannot fail of their accomplishment. Patient waiters cannot be disappointed. Believing expectation shall be realized.
Beloved, Abraham's conduct condemns a hasty spirit, reproves a murmuring one, commends a patient one, and encourages quiet submission to God's will and way. Remember, Abraham was tried; he patiently waited; he received the promise. and was satisfied. Imitate his example, and you will share the same blessing.
Patiently waiting for God's promises,

Tuesday, September 8, 2009

Numbers, numbers, numbers

1 -- days home from camping; arrived at chemo 9:00AM; falling asleep driving home at 4:00PM
<1.2--total bilirubin goal
2-- times Bryan spoke at the campout
3-- days (nights) of rain while camping
4-- shirts Bryan wore to stay warm; also coat, scarf, hat and wool blanket!
almost 5--liters of TPN infused daily
5.0--current bilirubin level
9.8--CEA tumor marker reading for this month!!!! The CPT-11 is working.
11--people in my immediate family satisfied with the weekend already talking about next year!
16--loads of wet laundry in the past 24 hours--I'll tackle the dry stuff tomorrow.
25.6 --last CEA reading; very discouraging but it allows for a bigger praise gap with the 9.8.
700--pictures Sarah took camping; hopefully, I'll post some soon!

Thursday, September 3, 2009

Happy Labor Day

First, chemo went great! Second, we are going camping!! Third, Bryan will be speaking at the campout!!! We'll catch up later....Thanks for ALL YOUR PRAYERS!!!!

Wednesday, September 2, 2009

Home Again, Home Again, Jiggity-Jig

We left Swedish tonight around 7:00PM. We are both looking forward to sleeping in our own bed. Bryan is already there and I will follow, shortly, once I get y'all caught up with our lives!

The doctor never found the reason for the bleeding. It has not returned; thank you, Lord! Bryan did decide he would like to get in a round of chemo, so we will be going there tomorrow morning. Depending on how he feels in the evening will determine if we go to our church camp out tomorrow night or wait until Friday morning.

We were amazed at all the work the children had accomplished while we were in Seattle. Our dishwasher decided it no longer needed to function Sunday evening. Since then, Sarah has been preparing food for the camp out as well as regular meals here at home, as a result there have been mounds of dishes which the boys and Esther have joyfully stayed on top of. Repair the dishwasher is on the TO DO list for next week (after the camp out laundry)!! I keep threatening we won't replace it; it is good family time washing dishes together! Right now, anything at home, is good family time!

"...and like a flood His mercy reigns, unending love, amazing grace...He will my shield and portion be as long as life endures..." Chris Tomlin-- Amazing Grace (My Chains Are Gone) **listen below**

Tuesday, September 1, 2009

Camping vs. Swedish Resort

Last night at 11:00pm Bryan's body decided it wanted to rest at the Swedish "resort" before we go camping. He discovered blood running into the bile drain bag, I called Dr. Chen and off we went to Seattle with Jonathan to assist. The ER was quiet and we were in and to a bed in the ICU within 3 hours! The doctors are scratching their heads not knowing what caused the now ceased blood flow. It was significant enough to need to transfuse 2 units. No chemo today, obviously! With the blood and no chemo, Bryan says he's feeling well and still intends to go camping with the gang. Amazing!! Hopefully, he will be discharged tomorrow and we can get moving with our plans. God's ways are definitely not our ways, but His way is perfect. God be praised for His continual provision to meet the needs of my husband and our family!

PS Daniel, 9, said, "Too bad Swedish doesn't have a swimming pool."