FOOD and Friends

To turn the corner: to pass the critical stage; to get by the worst point; hence, to begin to improve, or to succeed.

All things considered, yesterday was a pretty good day for us and it felt a bit like Sam turned a corner. We took a little field trip to a newly opened natural foods market in the “strip district” called Right by Nature and then a quick stop at Trader Joes for some Mahi Mahi.

Sam has always been interested in food – he’s one of those people that live to eat. I can remember when we were first together that even sandwiches tasted better when he made them. He just has a knack for food. So, you can imagine that not being able to eat has been a bit of a trauma for him and so now he is working his way through this issue one meal at a time.

So, the field trip was a way to brighten his day. He picked up an eclectic mix of things to try including fish sticks, tater tots, pate, scrapple, lobster ravioli, chocolate mochi, and blue cheese stuffed olives. The quantity he can consume is still small, but how about that smile?

Today will probably be a rest day for him. He has stepped down again on his meds and that tends to make him tired and he’ll need to rest a bit. But it feels like progress.

The amount of saliva that Sam generates is still minimal – which is the reason it’s hard for him to swallow and eat foods, so if you remember him in your prayers, please pray that the medication he is taking will begin to work. He’s not seeing any benefit yet, but it’s only been a few weeks so there is still hope.

On a sad note – a church friend, Chuck Stauffer, has died. Chuck was an inspiration to Sam as Chuck suffered with constant pain from a back injury too, but lived his life with tremendous grace. Our deepest sympathies go out to Marge and their family. We will continue to lift them all in prayer.

Christmas Greetings

We wish you a Merry Christmas and a Happy New Year!

We have a lot to be thankful for this Christmas. As we hoped, Sam was able to attend Christmas Eve Service and visit with friends he had not seen in quite some time. It felt like old times sitting in the pew together... that's one of the things that was hard for me (Maddy) going to church without Sam. I told you all the ladies love Sam ;)

Sam with Catherine & Yvonne

Today, Christmas Day, we visited with our friends Julia (who comes from Moldova) and Adam (who is from Ethopia) with their new baby (Daniel) and Julia's sister Tanya who has been visiting from Moldova (a small country near Romania for those of you who may be unfamiliar with that part of the globe). Julia and Maddy met when she worked at Maddy's office as the receptionist and we all became great friends. We think of them as family and always enjoy seeing them.

We also spent a few hours at Maddy's parents' home. The food was great and Sam experimented to see what foods he could swallow. He was surprised that he could eat ham but not breaded smelts. We new he could eat pasta, meatballs and kielbasa - that's pretty much a holiday staple at Maddy's parents house - but Sam had problems with the apricot roll and some of the other holiday deserts -- but, it's progress and we'll take it.

While we didn't get to spend this holiday with our children, we feel blessed and have nothing but joy in our hearts this Christmas. We wish you the same.

A message from Sam

Hello all!

Yes, it’s me in the flesh – Sam. I’m writing to thank all of you personally for your prayers and support. This really has been a strange year for both Maddy and me.

Being treated for cancer has been really difficult, especially the chemo which made me sick to my stomach for months… but God got me through that as well at the “being burnt” with radiation on my neck, face and inside of my mouth.

My recovery is going slower that I hoped. Isn't that the way it always goes?

Food… I love to eat and the most frustrating part of it for me is that I’m still learning what I can and cannot eat…. Soups, ground meats, pasta noodles and liquid, I can handle. It’s hard when you’re not producing saliva. I have to sip water every time I take a bite of solid foods and that makes me so full that it limits the amount I can eat.

I think my favorite meal so far was the tuna tartar and wontons; next was chili and then pureed soups. A lot of the sweets I love, like Reese’s cups for example, turn out to be too sweet for my teeth. If I could tolerate them it would help to add more calories to my diet. Ice cream burns my throat – go figure – I don’t do so well with meats as they don’t break down enough for me to get down my throat unless they are ground. Shrimp didn’t do so well and eggs either. I have yet to try fish but I’m hoping fish and crab meat will give me some variety. I would love to be able to enjoy bread so I could have pizza and hoagies – but lunchmeats failed the tests, too.

At least I still have a desire to eat, but I’m not giving up hope that some day I’ll be able to produce enough saliva, now that I've started taking some medication my E/N/T prescribed to help with that problem.

Obviously, I don’t know if I would be feeling so well if it wasn’t for the 5 cans of Crucial formula I take through the feeding tube every day, but the catch-22 is that it leaves little room for me to feel hungry or to consume mass quantities of table food. So, I guess this is part of the reason that recovery takes so long.

As for my spirit; what God has done and is doing for me is tremendous. He has and is showing me how he can bless me and answer our prayers. When I was first told I had cancer, I felt all alone inside and scared. It’s only when I reached out to God in prayer that I started feeling confident of his helping hand in this. Evident now in the way things moved and the confidence I felt in my medical team and yes, prayer team; God has challenged my faith and brought me to a higher level of trust in His grace and mercy for me and my family. It has brought Maddy and myself closer to Him and to one another. Each night before we turn in, after doing a short devotion we spend our last waking hour with the Lord in prayer and thanksgiving and that has made us feel extra blessed.

Maddy and I are more at peace with God at the helm and we ask Him daily to lead us into the future and bless us with good health and continued joy in our hearts.

So, thanks again for being there for us. We love all of you and pray that you will be blessed this year with knowing what’s truly important in life.

Sam

P.S. I hope to see some of you Christmas Eve as I plan to attend service at North Park Church.

Making progress

Today, after church and a stop for a few grocery items, I made home-made Ricotta cheese (it tastes awesome) and Sam made sweet potato red pepper soup (it was good, too). That was fun!

On Saturday Sam and I went out for a few hours in search of a winter hat for Sam and we stopped for lunch. At first Sam didn’t think we should eat out because he thought it would be a waste of money since he doesn’t consume very much at a sitting, but clever me suggested that he could just have soup or an appetizer. My scheme continued when I suggested that we stop at a restaurant that has been a favorite of ours in the past – Jimmy Wan’s Tai Pei Restaurant in Cranberry. It worked!

Sam had some pork wonton soup and some tuna tartar and he really enjoyed it. Do you know how amazing that is? First of all, as Dr. Celin said on Thursday, they poisoned his tongue and burnt it with radiation. So, it’s a wonder he can taste at all. Some foods are too strong and overwhelm his taste buds (salt, sugar, spices like garlic) and the consistency has to be right for him to swallow (he can swallow soft food, but not sushi rice cause it’s too sticky and gets stuck). So, it’s almost like a game trying to think of new things for Sam to eat.

Today I bought some Reese Peanut Butter Cups (one cup is 180 calories) and when I pointed out that one cup is about a half serving of one can of his formula, he said, “Then maybe I can just eat Reese’s all day.” My reply - “Silly boy, you still need good nutrition! You have to add the Reese’s to your diet so you can gain weight.” Seems like the “old Sam” is coming back.

Sam really likes dark chocolate, but the 70% dark chocolate doesn’t taste right to him now. So, today I got him some Lindt milk chocolate and that worked. Juices don’t seem to taste right to him either. The thing to remember here is that he’s making progress and we have to be thankful for that and remember they said recovery can take a year or longer. He still has a way to go.

We did finally get Sam a hat at LL Bean, and he was happy. I was too. It was a good day.

More waiting...

As you may be aware, Sam had a follow-up appointment with his Ear/Nose/Throat specialist, Dr. Celin, today. While Dr. Celin said he was, “tickled” by how Sam was progressing, he was undecided on going forward with a biopsy of his tongue.

He said he felt a little boxed in by the PET/CT radiology report and therefore could argue for a biopsy, but because a biopsy is somewhat random, he is reluctant to put Sam through that experience at this point. {I saw this one coming} He suggested that Sam come back in a month and maybe we can order another PET/CT scan or schedule a biopsy at that point.

Now, pardon me if I sound like Tevye, the father from Fiddler on the Roof, but on the one hand, it’s a little frustrating to not have definitive answer (if there such a thing with cancer treatments) and on the other hand Sam is just starting to make some progress swallowing some soft foods and a biopsy will definitely cause a set back to this progress. So, we agreed to wait.

Waiting – is hard for impatient people but;
Waiting – has advantages, too.

Since Sam’s last visit three weeks ago, he has gained 1 ½ lbs. I could do that in one afternoon, but he does have a different metabolism, darn! Dr. Celin suggested trying to continue to step down from the pain meds and he also prescribed something to try for dry mouth.

Dry mouth problems are a reality for Sam and while we all know saliva is important, its value is seldom appreciated until there is not enough.

Everyone knows that saliva is an essential body fluid for protection and preservation of the oral cavity and oral functions, but did you know that saliva is produced by the three pairs of major salivary glands and hundreds of minor salivary glands. And, while saliva is mostly water, it also contains over 60 substances, which:

Protect, lubricate and cleanse the oral mucosa;

Aid chewing, swallowing and talking;

Protect the teeth against decay;

Protect the mouth, teeth, and throat from infection by bacteria, yeasts, and viruses;

Support and facilitate our sense of taste

They say sipping small amounts of water during the day can help to keep your mouth moist, however excessive sips of water can reduce the oral mucus film and increase symptoms. Isn’t it always about balance?

Well, to wrap up, Sam and I have found when you have learned to trust God for the outcome it is much easier to find peace. Today we have that peace. We will wait – upon Him.

It's the most wonderful time of the year

Sam and I were fortunate to grow up in a time when Christmas carols were sung in school and consequently not only do we love all the old songs, we even remember a lot of the words.

Last week Sam got a call from someone at our church asking if he would like some carolers to come and sing on Sunday night and he happily said, "Okay," and I was thrilled by the idea.

I must say that it was the little push I needed to decorate the house for the holidays.

Since neither of our children will be able to make it home for Christmas, I wasn't looking forward to lugging our 7 foot tree up from the basement and rearranging the furniture, so I had decided to decorate with a little 4 foot tree my daughter reluctantly left behind when she moved to Arizona. So, almost as a way to connect with her, we decided to put up this tree:

Well, on Saturday it started to snow and by Sunday we had about two inches. Because we live on a road that is not serviced by our township, I was a little concerned that the carolers might not make it up the hill to our house. Then, last night the carolers started to arrive - first one car, then two and a third came and Sam and I looked at each other with amazement when the fourth car pulled into our driveway. It was so cool - but the best was still ahead. The children, the singing, the fellowship, to have a house full of visitors, the look on Sam's face, the joy of celebrating Christ with other believers!!! Wow.

Little Hope sang beautifully and really embodied what Jesus said, "Mark 10:15 Truly I say to you, Whosoever shall not receive the kingdom of God as a little child, he shall not enter therein. "

[As a little child - With the temper and spirit of a child - teachable, mild, humble, and free from prejudice and obstinacy.]

The children had hand-made a few Christmas cards for Sam and also presented him with a "candy wreath" and a poinsettia... it was very touching. We offered them brownies, milk and our thanks. Well, needless to say Sam and I had our socks blessed off!

Thanks to all of you who took the time to bless us this Christmas season.

Catching Up

I know I've been remiss in posting, but it seems like either I'm running around like a chicken with her head cut off, or it doesn't seem like I have anything new to say.... however, I've been feeling inspired so I'm probably going to blab aimlessly.

I'll take you back to the day after Thanksgiving. Max, Leslie and I had the wonderful opportunity to visit Phipps Conservatory for a few hours in the afternoon (Sam needed a nap because of all the Thanksgiving excitement - or it could just be the meds.) And we had a great time taking numerous photos:

Sam has been working on trying different foods with some successes and some problems.

Since Thanksgiving he has tried and been able to eat a few spoonfuls of - French toast; sweet potato bread pudding with ice cream; wedding soup; pasta with a little sauce; avocado; pumpkin pie; and sweet potato/parsnip soup; chocolate milk; chocolate brownie.

The problems have been sushi rice (it didn't want to go down); ice cream was too sweet; and last Thursday, he got brave and tried to swallow a small Senecot-S tablet and it got stuck in his throat which was not fun for him. He irritated his throat so much trying to cough it up that he didn't try anything the next day. He did get back on track and is trying.
Some foods just don’t taste quite right to him, and the thought of choking isn’t very appealing… so he does approach food with a level of caution.

This Thursday Sam has a follow-up appointment with his E/N/T doctor who will determine if he wants to biopsy Sam's tongue. I'm not sure how Sam or I feel about this appointment... on the one hand the thought of Sam having to undergo this procedure is not appealing; but on the other hand it would potentially give us a clearer picture of Sam's diagnosis. But, we have found that it is much more beneficial to live the day you have and not focus too much on what might be ahead. For us, there is peace in that philosophy.

Don't get me wrong, this is not a head game and it is not easy. For us, it is a day-by-day process of trusting God for the outcome and taking things as they come. When we find that we are not in that place - that's when things seem upside down. That's why prayer is so important. Like my dear friend Thelma said once, "Prayer is like the oars of your boat. They take you closer to shore - the shore won't come to you."

Thanksgiving Blessings

It was a beautiful sight!

Our Thanksgiving menu included turkey, mashed potatoes, gravy, stuffing, asparagus, sweet potato bread pudding, cranberry sauce, crescent rolls and pumpkin pie, but seeing Sam sitting at the table with a dollop of everything on his plate was huge; and the best news is that he was able to swallow a little bit (about a teaspoon) of everything. It was awesome!!!

This Thanksgiving holiday we had a triple blessing. Not only did our son Max and daughter-in-law Leslie drive in from Chicago, but my parents were able to join us for the holiday too! And, thanks to the marvels of technology, we were able to video conference with our daughter Deanna and her and her boyfriend Eric who reside in Arizona (along with Eric’s father, brother and sister who were visiting them) on the X-Box 360 which was so cool.

Unfortunately, at this writing, I don’t have Thanksgiving photos to post, but I hope to have some to share, soon.

Since my last post almost a week ago, we have a lot of praises to share. Sam is still taking several naps during the day, but nothing like a week ago, which tells me that he has adjusted to the dosage change. And, if all goes well, he will try to reduce the pain meds down a little more this week with the hopes of a twice a day dose instead of three times a day. His throat is still sore and it still hurts if he talks a lot, but his voice is sounding a little better – not so much like “Froggy” from “Our Gang - The Little Rascals”.

The biggest praise is that for the last three days he has increased his formula from 4 to 5 cans per day which means he’s getting 1875 calories per day instead of 1500/day which should give him more energy too. He is also trying to eat a little solid food every day. This is progress.

A Future Goal:

Sushi is one of Sam’s favorite foods, but turkey is a start. Holidays can be stressful but while this one was busy, it brought us a glimmer of hope.

A lot of this.

Sam has been sleeping a lot this weekend. He has gone from 80 mg. to 50 mg. of his pain meds within a week and from what I've read, the side effects of withdrawal are fatigue, sweats/chills, watery eyes, nausea, and constant yawning. That is a pretty accurate description of how he's been feeling for several days. But it also said those symptoms should only last for about a week, so I expect he will be adjusting soon.

I have been encouraging him to try to eat food and today he had a few tablespoons of a recipe I found in the Budwig Diet. You mix 3 tablespoons of flax seed oil with 6 tablespoons of low fat cottage cheese and blend it well. Then grind 2 tsp of flax seeds and add to the mixture. It actually didn't taste bad and he was able to swallow it and it didn't taste awful to him.

If you are unfamiliar with the Budwig diet, there are plenty of links to information about it on the web, but essentially it is a diet that helps fight cancer naturally. Many people have had success with this diet and it has been studied scientifically and shown to be effective for some cancers.

Sam has tried vanilla ice cream which burned his throat - it's the sugar content. Juicy Juice grape flavor tasted terrible to him and he didn't like vanilla yogurt he tried. He's going to try eating cream of wheat cereal again this week. We are hoping that he may be able to tolerate some mashed potatoes, gravy and turkey on Thanksgiving. So, if you think of Sam, pray that he would be able to enjoy some table food on Thanksgiving - that would give him a boost for sure.

I think one of the hardest things for Sam is that this "recovery process" takes a very long time. It is hard to be this ill for this long and they say it takes a year to recover. That's a hard thing to wrap your mind around. You wonder, what could be taking so long? I think it's hard because the outside of his neck looks fine - but the radiation did so much damage, the body has a lot of repair work to do and that takes energy too.

Anyway, it is wonderful to think that my Sam has a chance to beat this cancer. What's a year? There are some wonderful friends of ours who would give anything to have that chance. We are grateful for this chance.

Our fondest regards to all of you who are reading this blog and may you have a Happy Thanksgiving. If you have time to post a comment, I'd love to hear what you are thankful for this Thanksgiving Holiday.

Maddy

Roseanna Roseannadanna moments

"It's like my father always use to say, it's always somethin. If it ain't one thing, it's another."

Seriously, Sam could use your prayers. He's a little discouraged. The swallowing is sort of working again, but the choking/drowning feeling he experienced really halted his progress. He has since been able to swallow his pills with water but he is really hesitant to try to eat food. Even with Dr. Celin's expert opinion that swallowing food is easier than water, he hasn't tried yet. I think he just wants to take it slow and may just need to attempt it when he's ready.

Of course that makes the line I walk more difficult because I want to push him and say, "But Dr. Celin said... blah, blah, blah... don't you believe him?... blah, blah, blah." But then I realize that I wouldn't want someone to push me into a pool if I wasn't ready. So, there's the answer, right?

I think the fact that Thanksgiving is coming and he was hoping to be further along with the food issue has put a damper on his mood. The idea of eating a piece of turkey thigh was starting to sound good to him. Not that he's going around with a long face, it's just that he's sick of being sick. He wants to be well again and it's not happening as fast as he would like.

On the lighter side, I think I know why Sam is tired. It's cause he’s working in his sleep. Figuratively, of course. It’s rather humorous to me (not so much to him) but the meds he’s on cause him to have very vivid dreams and so he talks in his sleep quite a bit and makes gestures - like, for example, he'll look like he's washing his hands or like he's working the remote. I have trouble sleeping cause when he starts to talk, I'm nosey and want to know what he's going to say. Mostly he mumbles stuff I can't understand. Every once in a while it's pretty clear. Like one night he said, "I'll get that, Jim." When I quizzed him about it the next day, he said that he was dreaming he was in the audience of the David Letterman Show and someone was performing some tricks with smoke and he was participating. I guess you had to be there.

Well, I guess the best course of action is to take things as they come, day-by-day, and continually remind ourselves to be thankful Sam's alive and has a chance to beat this cancer. It would be great to be further ahead in this process and yet I remind myself that they say it takes a year to recover from this treatment.

Please pray for courage for Sam and patience for me.

It's all in your head - literally and figuratively!

We were squeezed onto Dr. Celin's schedule today to determine the cause of Sam's sudden problem with swallowing, and he seems to feel that this experience is probably just a reflex action by the body.

After examining Sam, Dr. Celin said he didn't think there was anything different and that once you try to swallow and choke, your body tends to tense up and that just makes it harder to swallow. It's kind of like riding a bike after you haven't ridden one for a while - you are rusty and lose the technique. The same holds true for swallowing - Sam's a bit rusty. He also had no real explanation for the hiccups Sam has been experiencing.

He suggested that Sam continue to try to eat and drink and he gave Sam a prescription for a "Modified Barium Swallow" test to be scheduled in a week - if Sam feels the situation hasn't improved. This test determines if therapy would be beneficial.

• For those who like the detail - The test procedure is:
  You will be given small amounts of a barium preparation of varying consistencies from thin liquids to paste to a piece of coated cookie.
  Varying the amounts and consistency of the contrast material allows your doctor to determine which types of food are difficult for you to swallow and to locate the structure responsible for the trouble. The fluoroscopic screen allows the physician to view the results as the test takes place.
  The test is usually performed with a speech pathologist present who can assess your swallowing ability and devise a strategy to correct the problem. You may be asked to change your head position, breathing pattern, chewing habits, or the consistency of your food.

Dr. Celin reiterated what Lori, Dr. Chen's nurse, said - that while it might seem strange, water is the hardest thing to swallow. He suggested that Sam thicken the water or try something with more substance. He also said that because of all the radiation, his tissues are damaged and that makes it more difficult to swallow water.

I want to thank our friend Larry Satariano, who is a physical therapist, for taking some time to talk with Sam last night and who gave him some pointers on some swallowing techniques. That helped.

Anyway, we are feeling a little relieved and suspect that this situation may have been caused by the exams last week, but we can't be certain and the doc wasn't going there. But, what do we know, right? - it's always dangerous to be an armchair physician and that's one more reason to get the professional perspective. Time will tell.

Thanks for your prayers and support. We are grateful to have been blessed with such great friends.

A Bit Frustrated and Confused

For some unexplained reason, Sam seems to be having trouble swallowing today. He says it seems like the water or whatever just seems to sit at the back of his throat and won't go down. This is not only confusing, it's a bit unnerving! When he tried swallowing his medication today, he ended up having to cough up and spit out the water because it wouldn't go down and he felt like he was going to drown.

So, Sam called the E/N/T's office because he was getting nervous about choking and the doctor-on-call told him not to try to swallow anything (like his meds or foods); that he wasn't overly concerned; and to call the office on Monday to schedule an exam if the problem is still there. And, of course he said if Sam has trouble breathing to go to the ER.

This is weird and a bit upsetting because he had been doing so well. After his two doctor visits (one on Wednesday and one on Thursday) where he was thoroughly examined, he had some cream of wheat and was getting fluids down his throat. I'm not sure if this has happened because of the exams where the docs were examining his throat by putting their fingers into the back of his mouth or if something else is going on?

I keep thinking there must be a simple explanation. Usually that's what happens - it's some normal part of recovery or something like that and you have worried for nothing. Unfortunately, we have no frame of reference when it comes to the effects of radiation treatments on the throat.

Why does this stuff always happen on the weekend? It's enough to make you lose your mind. So, here we are again, having to try to find answers and exercising our faith muscles again.

We could use your prayers. Prayers for wisdom, strength, patience, calmness and faith.

A difference of demeanor.

Does a doctor's demeanor make a difference? After today, I'm thinking maybe it does.

We arrived at Dr. Celin's office promptly at 8:50 a.m. this morning. He is Sam's Ear/Nose/Throat specialist and after the usual chart update, Dr. Celin told us almost the same thing that Drs. Chen and Osborn said yesterday, but somehow it was different.

I think it's his "bed-side" manner. More than once during the conversation he said that there is some agreement among physicians that having a PET/CT sooner than six months can give a false positive. And therefore, it is probably too early to determine the meaning of the "glucose uptake" of the cells. Like cancer cells, cells that are healing will also draw up glucose faster and so he feels it's too soon to know. In addition, because taking a biopsy can be hit or miss and because Sam will have to have general anesthesia due to the location of the tumor, he would like to re-examine Sam in three weeks and schedule a biopsy the following week. That way, he could always cancel the biopsy if it's unnecessary.

So, the result of today's visit is that we still don't know if the cancer is gone. But, we left the doctor's office feeling a little less concerned and I am having trouble explaining that other than I think I have more respect for Dr. Celin - gut feeling again, I guess.

Sam and I have decided to take the focus of our life off of "results" - waiting for results; hoping for a certain result; expecting doctors to produce certain results. Maybe that's just what happens through this kind of process, but the "end result" is that when you live waiting for results, you stop living. While it's kind of hard for Sam to "do" a lot, I think it will be beneficial for both of us to re-direct our thoughts to the things of which we have some control. Like perhaps our attitude.

The best attitude we can choose is to live like today is the last day we may have on earth rather than one more day closer to a result. We'll see how that goes... hopefully we will have that resolve for more than one day :)

Inconclusive evidence

As you may be aware, Sam had an appointment with his radiologist and oncologist today to review the results of his most recent PET/CT scan. The answer is... we still don't have an answer.

There is still an appearance of a tumor at the base of Sam’s tongue but it is significantly reduced and they are not sure it is still cancerous.

The radiologist and oncologist can't really tell from the PET/CT scan exactly what is going on in the tissue because it can "light up" or metabolize for several reasons, including radiation inflammation, healing or scar tissue, and cancer, but only a biopsy will give definitive answers.

Sam has an appointment tomorrow morning with his Ear Nose & Throat (E/N/T) physician who will determine whether to do the biopsy. But, it is even possible that it’s too early to do the biopsy.

There is some positive news. His lymph nodes in his neck are back to normal size (they will continue to monitor them). The best news is that there is nothing registering in his chest scan so the cancer has not spread to his lungs. That’s a blessing for sure!

So, today’s visit is as we anticipated... and we are not alarmed; tomorrow we may have some additional information.

Prayer moves mountains and soften hearts.

Mmmm... Cream of Wheat

While it was only 2 tablespoons of Cream of Wheat with a little milk and sweet cream, the best part for Sam is that he was able to swallow and keep it down. Now, that's progress. I don't remember the last time Sam took food by mouth... probably August 12th... that was the date of his second chemo and he had nausea for 3 weeks and after that, the pain from the radiation was so bad he couldn't swallow food any more.

The other positive aspect of this food trial is that the Cream of Wheat tasted like Cream of Wheat and that makes a big difference in his willingness to try other foods. Last week he tried eating Miso soup and that tasted horrible to him - which turned him off to trying other foods. But, if all goes well, he may try to do a taste test of some other foods tomorrow to see if his taste buds have come back.

As for our prayer needs, we are trying to keep Tuesday's appointment in proper perspective and we need to continue to rely on God's strength and trust Him for the outcome. I don't want to put too much hope in it being a final answer. It is possible that the scan was given too early to give us a complete answer or there may be some other scenario that we haven't anticipated so I'm being cautious about my expectations of the results. I think we are both relaxed about Tuesday and we are ready for whatever news awaits us.

Thank you for your continued prayers.

6 ounces of coffee

Can drinking six ounces of coffee be considered a milestone?

I think we can safely say that if you have had nothing except formula for months by tube - drinking six ounces of coffee would be considered a milestone and that's what Sam did today - he sipped six ounces of coffee and it even tasted like coffee. That must have seemed like heaven to him.

Tomorrow he is thinking of trying Miso soup! Small, but important, steps.

In two days he will have his PET/CT Scan (Nov. 6th) and in a week from today (Nov. 11th) we will have the results. Time seems to be moving so slowly - but then I think - it's been almost seven weeks since Sam finished his treatments. Yikes.

We are praying that the scan will be clear.

We will also be praying for our country.

Passing time with his BFF (best feline friend)

Nico loves to share the recliner with Sam.



Mail call.... Sam really appreciates all the cards family and friends have sent.

Seeing how Sam appreciates getting well wishes in the mail has convicted me that I have missed the opportunity in the past to cheer someone who is recovering from an illness or loss. It's not the quality of the card or the beauty of the verse, it's the love in action that is shown when someone takes the precious commodity of time to bless you.

I am reminded of a parable in Matthew chapter 25 that talks about how we are to treat others:

The Final Judgment
31 “But when the Son of Man comes in his glory, and all the angels with him, then he will sit upon his glorious throne. 32 All the nations will be gathered in his presence, and he will separate the people as a shepherd separates the sheep from the goats. 33 He will place the sheep at his right hand and the goats at his left.34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the Kingdom prepared for you from the creation of the world. 35 For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. 36 I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.’37 “Then these righteous ones will reply, ‘Lord, when did we ever see you hungry and feed you? Or thirsty and give you something to drink? 38 Or a stranger and show you hospitality? Or naked and give you clothing? 39 When did we ever see you sick or in prison and visit you?’40 “And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’41 “Then the King will turn to those on the left and say, ‘Away with you, you cursed ones, into the eternal fire prepared for the devil and his demons. 42 For I was hungry, and you didn’t feed me. I was thirsty, and you didn’t give me a drink. 43 I was a stranger, and you didn’t invite me into your home. I was naked, and you didn’t give me clothing. I was sick and in prison, and you didn’t visit me.’44 “Then they will reply, ‘Lord, when did we ever see you hungry or thirsty or a stranger or naked or sick or in prison, and not help you?’45 “And he will answer, ‘I tell you the truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me.

Sam and I appreciate the love and concern we have received from you.
Thanks.

Retail Therapy

Today was a small step on the road to recovery. Sam and I went out for about a half hour to shop for a few things for Sam. As we were driving along, we tried to remember the last time that Sam was out of the house for something other than a doctor visit or test, treatment, etc. To the best of our recollection, it was August 9th for a family reunion. Wow, how time flies when you’re having fun.

Ironically, both Sam and I had some retail therapy this weekend. On Saturday, I stopped by the mall and did something I rarely do; I got a "makeup makeover" at the Clinque counter. It's one of those things that makes a woman feel "girly" and pampered. It was fun. Is that pathetic? Probably, but you know what? I don't care because it was a distraction from everything - including this stupid election. Won't we all be glad when that is over?

Even though Sam decided he was up for a little change of scenery, not much else has changed with his condition – at least to the naked eye so to speak. What has changed is that more time has passed and we are 11 days away from the PET/CT Scan. We are in countdown mode.

Patience and Peace

Wednesday I had to stop by the Cancer Center to pick up new prescriptions for Sam and I had an opportunity to talk with Lori, Dr. Chen's nurse. After we exchanged pleasantries we talked about Sam's progress. She shared with me that another patient that has recovered from his type of cancer reported that she finally felt better after seventeen (17) months! Lori said that they typically tell patients that it takes about a year to recover from this treatment. I don't remember hearing that timetable; I think that might have registered in my memory.

Because it took a month for Sam to begin treatment after his first PET/CT scan I have been wondering if the treatment they developed would account for the possibility that the cancer would have spread. So, I asked Lori about the chemo drug they used, Cisplatin, thinking that maybe the reason they gave him Cisplatin was to kill any cells that may have spread to other areas of his body. Unfortunately, Lori said that Cisplatin is given to enhance the effectiveness of the radiation treatments. I think my eyes got larger at that moment as I realized that they weren't focused on whether it might have spread. Lori looked at me with understanding eyes and she said, "I know people don't understand this, but we treat the main problems first." I pushed her further for clarification and asked, "Since this drug moves systemically, wouldn't it destroy cancer cells in other parts of the body?" Her answer, "No, I don't think so. It's used to enhance the radiation treatments."

That was kind of a big gulp moment for me. I remember Dr. Chen remarking at our last office visit that radiation sometimes doesn't get all the cancer in the lymph nodes and if that's the case they can surgically remove them. So, all this means is that we won't know anything for certain until November 11th. Waiting is hard. It requires patience. I have learned in the past that asking for patience is a serious thing to ask for as those lessons tend to be painful. You know what they say - Be careful what you wish for, you might just get it.


Like most people there have been plenty of times in my life that I have had to learn patience and to be honest that is one of the areas of my life where I still struggle. It probably has its roots in wanting to be in control. You know, one the the triplets of terror I mentioned in the past (expectation, perspective, control).


When you run into the grocery store for a few items and you are standing in the "express" checkout line waiting for the line that never seems to move, do you find you are impatient, or do you think of it as I do as an opportunity to do nothing and not feel guilty?


Truthfully, the grocery store example is one of the few times I exhibit patience when waiting. I can list about 15 other examples where patience is something I struggle with: calling a company and having to go through multiple layers of options before being able to talk with a human; commuter traffic; having a slow computer; giving computer tech support to a novice over the telephone; and chief among them for me has been waiting for test results on Sam's condition.

Gal 5:22 But the fruit of the Spirit is: love, joy, peace [or, freedom from anxiety], patience, kindness, goodness [or, generosity], faith,


So, now I think maybe it's better to ask for peace - aw heck, who am I kidding, I need the whole bowl of fruit.

So, if I were to list our prayer needs, the biggest need is for Sam's relief from pain. He would love to be able to swallow and not have pain. He is weary of being ill and would love to be able to see some measurable progress. Patience. Patience. Patience. Waiting is hard but we have HOPE; and knowing that others are praying for us and have shown us kindness - that makes it bearable.

Refresh your mind

When you are viewing a website; periodically it helps to "refresh" the screen so you can see the most current, useful or even important information. I think the same thing is true of our mind.

Obviously there is no button to push to refresh or renew your mind, but do we even recognize the need? May I suggest that the refreshment comes when there is an inner desire to view things with a new perspective or even an outward force that drives you towards that end?

I've mentioned before that Sam's illness has brought a new challenge to our life together. Over the years things change and we adapt because there is time to adjust. This new twist in our circumstances came about so quickly, it is challenging to adapt to the emotional impact and so it requires a constant refreshing of our minds/hearts.

Sam and I talk from time to time about how this life experience fits together with the rest of life. Would this experience be any different for us if our belief system was different than the ones we hold? Have we learned anything about ourselves or about our beliefs through this experience?

Looking back over the years, I can see how our lives were molded and transformed by the path we walked. In the last few years however, for a variety of reasons, I have felt like I've been in a spiritual rut and in need of refreshment. Well, let me tell you, there is nothing like this experience to knock you down to your knees. But, that is the best place to receive refreshment.

There is a proverb that says, "The spirit of a man will sustain his infirmity; but a broken spirit who can bear?

It's hard for Sam to deal with the very slow healing process from his treatments. The change in his condition one month after his last radiation treatment is there, but barely recognizable. He just wants to feel better again and it is difficult when that process is taking so long. At times it can feel like there is no upside, but then we are reminded that without this treatment there was no hope. Hope. That’s the refreshment.

We hope that the medical treatments will "sustain Sam’s infirmity”, but there is only one healer and hope in Him mends our broken spirit.

Sam and I hope to be able to put this chapter behind us in a few weeks after his PET/CT scan. We look forward to a day when we can have some fun together again... like a Halloween party at Dean and Valerie's house.



Well, have a smile on us. And remember to count your blessings - when you look for the good things in life, you will find them and usually they will outweigh the bad.

Things that really matter

If you are wondering how Sam is feeling, the report is that not much has changed. Now, on its face that statement might sound negative, but I'll try to give you my spin.

On October 5th I wrote:

Sam is still on serious pain meds because he continues to have tremendous pain especially when trying to swallow or talk. He is not taking any food by mouth; still has a lot of mucus secretion and is tethered to a feeding pump taking in about 1500 calories per day, a process that takes from 11-12 hours to complete. I know he is frustrated at times because he feels like he has been this way forever. Because his progress is so slow it’s hard for him to see any and he’s tired of being a zombie.

Almost ten days later, what has changed? Not a whole lot. But, on the positive side he's not any worse. Sam has increased the amount of formula intake from 70 ml to 90 ml per hour which means that it now only takes about 10 hours to finish 32 ounces of formula for 1500 calories. The next goal is to add an additional can (for 1875 calories) since he still is not taking any food by mouth. Coughing up the mucus secretions have reduced from maybe 50 times/day to about 30 time/day. He is still taking significant pain meds, but apparently that is typical for this treatment.

About a week ago he tried some apple juice and it tasted so awful to him that he only took a sip. Maybe this weekend he will try some cream of wheat cereal or oatmeal. Because he still has tremendous pain swallowing and talking he isn't inclined to try to swallow food --- I can't say I blame him.

Last week Sam had a couple of visitors and while he enjoyed the visits, all the talking was too hard on his throat and now he isn't talking much at all in an attempt to reduce the pain. He's using a white board and dry erase marker to communicate. Once in a while he will try "Sam sign language", but that just drives me crazy. It's like trying to play charades - but totally frustrating in this circumstance.

This past weekend our son Max and our daughter-in-law, Leslie, came in from Chicago for a visit. It was really nice to see them and even though Sam felt bad because he couldn't talk much and had to nap a lot, I know it lifted his spirits to see them.

Like Sam, Max enjoys cooking and on Saturday night Max, Leslie and I cooked and enjoyed eating a meal together. Since Sam has not been eating food by mouth, the one thing that I really miss is sharing a meal with him. So, it was really nice to sit down at the dinner table together.

Sam looks pretty good in this picture. You might notice that the skin burn he had on his neck from the radiation is now cleared. While he is still very thin, he's still alive. Thin doesn't matter when you are fighting for your life. Life is short and when someone you love has cancer, you become keenly aware of the things that are important in life. It brings into focus what you truly value. I value Sam.

I'll leave you with this: Be kind to each other, tender hearted, forgiving one another - even as God, for Christ's sake has forgiven you. Ephesians 4:32.

UnRaveled

Suffering seems to make us dig deeper and question things. Why is this happening to me? Why now? What am I to do about this situation? How can we make sense of all this?

Last night, before Sam and I turned in we talked a little about this issue hoping to understand our desire for his cancer experience to make sense. We wondered - Is it that we hope that our lives matter and that we are here to accomplish something or make a difference in the world? Why do we want or need for things to make sense? Are we questioning the sovereignty of God? Does God need us to accomplish his plans?

As we wrestled with those questions we considered - Does our desire to make a difference become an idol in our lives? Is it about our needs? It’s the concept that even good things can become idols and because they are good, it is difficult to see how they can rule our lives.

Like they say, “It’s all about me.” Consider the trio: self-righteousness; self-deception and self-pity.

I draw from my Study Notes from, “Gospel Transformation”, a course Sam and I took a few years ago:

Self-righteousness
Pride by its very nature does not see itself. It comes with a “cloaking device.” When I am right and claim it, then I become self-righteous and cannot see my own failings in a given situation. When I cannot see my sin, I become insistent and demanding in my relationships with others.

Self-deception: I am right, therefore I cannot be wrong.
I am right. (self-righteousness)
If I am right, then you are wrong. (condemnation)
If I am not wrong, then how can I possibly be wrong? (self-deceived)

Self-pity is the loss of hope, rooted in our inability to make life work on our own terms.
I can do this. I can make this work (self-motivation)
I failed. (I am powerless)
How could I have failed? I know I can do this (Self-pity: I look bad to others)

Then there is the classic question people always ask; why do bad things happen to good people? This question is really a loaded question. First of all how can we be sure (aside physical discomfort and possibility of mortality) that having cancer, for example, is a “bad” thing to have happen to you? Consider that trials produce perseverance; perseverance, character; and character, hope. And then we can question; who is really good?

All these questions bring to mind the first question Satan posed to Eve, “Did God really say…?” Instead of focusing on all the good things God gives us, we focus on the negative. The ultimate suggestion by the “enemy”, God does not really love you, because if he did, he would not allow you to go through this; or he wouldn’t be so restrictive; or not answer your prayers. We stumble when we put our faith in ourselves instead of trusting God for everything.

Sam’s healing process is moving so slowly we see little change with his physical condition. He still has major pain swallowing and talking; mucus; is not sleeping well; etc. I have been carrying stress in my back. It is very tight and after going to my chiropractor and being cleared for any problem, I chalk it up to stress. No doctor can aleviate our maladies; it requires time and for us to exercise our mind and be reminded to put all our cares in God’s hands. In Matthew 11:28, Jesus says, “Come to me, all you who are weary and burdened, and I will give your rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

We never really came to any final conclusions last night, but after praying and giving it over to our Lord, we rested.

Sam's Progress - oh so slowly.

The healing process seems to be moving along at a snail’s pace. Sam is still on serious pain meds because he continues to have tremendous pain especially when trying to swallow or talk. He is not taking any food by mouth; still has a lot of mucus secretion and is tethered to a feeding pump taking in about 1500 calories per day, a process that takes from 11-12 hours to complete. I know he is frustrated at times because he feels like he has been this way forever. Because his progress is so slow it’s hard for him to see any and he’s tired of being a zombie.

People often ask me how I’m doing. Like this morning at church, a dear friend told me I looked really good for what I’m going through. I don’t usually take compliments very well - I either laugh or feel embarrassed but this time my friend’s comment triggered in my mind other comments and questions I’ve received as Sam and I have been going through this experience. Like: How are you really doing? You seem so strong, are you sure you’re okay? I don’t think I could handle it if this happened to my spouse or someone I love.

The first time you hear the words, “You have cancer.” they sound larger than life. When others hear about Sam’s cancer diagnosis I think they, like we did at first, imagine it in its totality. But after the initial shock and as treatment begins, you find that it is a process that you deal with incrementally. Also, each cancer treatment is different and each person responds to treatment differently so you really don’t know what to expect and doctors don’t give you too much information. I guess it’s because they don’t want to speculate.

People seem surprised that I am not falling apart or something. Aside from the fact that there is too much to contend with on a daily basis, I believe that God just gives us the grace we need to make it through each day when we lean on him. I like how my friend Gloria Baldauff put it in her blog about her husband Jim who is battling cancer.

Quote:
“I've always said I could never be the mom of ten unless I had mom-of-ten grace. I couldn't bury a child, unless I had bury-a-child grace. I could never be a martyr for Jesus unless I had-martyr-for-Jesus grace. (However, I love him so much, that I might fight that one in my flesh. But he's so gracious, he wouldn't make me do it myself.) I never thought of it in terms of manna, but I've always known that anything I've ever gone through that was tough was because HE gave me the grace to go through it. And He has given me the grace I need for this. I know that. And He'll give me the grace for the next day and the next day.... And it's still hard. Still very, very hard.”

As I was getting ready for church this morning I had the radio tuned to the local Christian radio station and heard someone talking about joy. I liked his five suggestions for not losing your joy:

1. Be honest with God and walk in the light. “Walking in the light” means following Christ completely. As we trust in God and are made “truly His,” He will turn our path from darkness to light, for “God himself is light.”

2. Don’t let the world steal your joy – the world will try to convince you that God is imaginary and you are foolish to believe in a God you can’t see, hear or touch.

3. Don’t let other people choose your feelings for you.

4. Don’t live in regrets – live with your back toward the past

5. Choose to rejoice.

He also referred to one of my favorite passages, Philippians 4: 4-9
(4) Always be full of joy in the Lord. I say it again—rejoice! (5) Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon.
(6)Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.
(7) Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
(8) And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.
(9) Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

Joy can be engaged regardless of how a person feels and our inner attitudes do not have to reflect our outward circumstances. True peace or joy is not found in positive thinking, in absence of conflict, or in good feelings. It comes from knowing that God is in control. Life is easier when you surrender control to Him.

That’s how Sam and I make it through each day.
Sam and I again want to thank all of you for your prayers on our behalf and for the love you have shown us.

Is Sam Glowing?

This morning we reported to the UPMC Passavant Cancer Center for Sam's follow-up visit with Dr. Chen his Radiologist.

Dr. Chen's Assistant, Lori, greeted Sam and told him he looked great. I couldn't believe my ears when I heard myself say, "Boy, you have low standards." Sam didn't hear the comment, but Lori laughed. I guess "great" is relative.

Lori, Dr. Chen's Nurse/Assistant

Lori asked Sam how the eating was going, not realizing that he still isn't eating anything by mouth - and only swallowing water. Sam just gave her a puzzled look and said, "I haven't even tried to eat anything yet; it hurts too much." Her next question was, "On a scale of 1-10, when you swallow, what is your level of pain?" Sam said, "Eleven." She looked surprised and Sam said, "Really, sometimes it hurts so much I cry." I have not seen him cry, (that's something he would probably shield me from) but I believe it and I felt like crying. Can you imagine how much it would hurt if he were not taking pain medication. Can you believe that it still hurts to swallow water even with the pain meds? Wow!

When Sam got on the scale I was surprised that it weighed him at 129 pounds. He has been getting in 1500 calories the last few days, so I think he should be able to maintain or gain in the coming weeks, especially once he starts to eat some soft foods. Lori told him that something like oatmeal might be easier to swallow than water because he would have more control over how fast it goes down his throat. I guess that makes sense, but I think that "experiment" will be a little ways off.

When Dr. Chen examined him he said he thought his mouth looked good and he was happy with the amount of saliva that Sam had. (Remember, they nuked his salivary glands) Dr. Chen thought the "Ethyol" shot may have protected his glands. He said that he wasn't surprised that Sam had a lot of difficulty swallowing because they really hit the throat and tongue area hard.

When Dr. Chen learned that the PET/CT scan was scheduled for Oct. 20th, he kind of freaked out. With his cute foreign accent, he said, "Too early, too early. It should be 8 weeks after radiation stops, we don't want false positive. Why would they do that? Who scheduled that?" Lori, in her calm manner explained that Oncology set it up and she would check with them. Dr. Chen then said, "Okay, I think it should be mid-Nomember unless they want it for some other reason." Next, he felt the back of Sam's tongue and thought the tumor seemed reduced and as he checked the lymph nodes, he said that we should follow up with the E/N/T specialist after the PET/CT scan because sometimes the radiation does not irradicate the cancer there and they could remove the lymph nodes.

When I got home from work tonight, Sam said the scheduler for the PET/CT scan had called and he is now scheduled for November 6th and the "results" visits are scheduled for November 11th. While its a little disappointing that we have to wait longer, it is certainly better not to end up with a false positive. We are gaining patience through this process.

If there is one flaw with their operation, its that these two groups (radiology and oncology) seem to have issues coordinating their plans regarding scheduling. I guess if that's the biggest problem they have we should be glad.

Remind me to breathe.

Last week, my friend Catherine asked if there was anything she could do to help or if there was anything I needed. For the most part, we don’t have any projects that need an extra pair of hands but the one thing I miss is sharing a meal with someone; so I answered, “I’d love to go out for dinner.” and so she and I and another friend, Yvonne, met for dinner tonight at a local restaurant.

As I pulled out of my driveway, I decided to just enjoy the drive so I turned off the radio and began to anticipate our meeting. People always ask me how I’m doing and without really thinking, I usually say, “Okay.”, but Catherine and Yvonne are the kind of friends that really want to know how you are and I began to do a little soul-searching.

I’ve said to others that I’m kind of numb and that I don’t have any feelings, and as I contemplated I thought it’s kind of like watching a suspense movie… you hold your breath waiting for something to scare you. Like in the movie Wait ‘Til Dark where, "A recently blinded woman (Audrey Hepburn) is terrorized by a trio of thugs while they search for a heroin stuffed doll they believe is in her apartment"; and being “on the edge of my seat” hoping she wouldn’t be harmed before the movie was over. It’s a bit like that – maybe not that intense.

But when I really dug deeper, I asked myself how my situation is any different from every day life? None of us typically know ahead of time whether we will be in an accident that day; or we will be wiped out on Wall Street; or our spouse will leave us; or a child become ill; or our husband be stricken with cancer or some other illness…so why don’t we live our day-to-day lives holding our breath for something bad to happen? I guess a few superstitious people do, but most of us don’t live like that. None of us know what will happen 5 minutes from now so we just don’t focus on 5 minutes from now. Most of the time, most of us live in the now -- which is really all we have anyway. Tomorrow is not promised, is it?

Our situation is a little different in that we know that we have an event in the near future where we might not get the answer we want about Sam’s illness. I wish I could be like Rip van Winkle and wake up three weeks from now. It’s hard to wait for answers.

Sam's condition has improved minutely. I reminded him today that he didn’t need to take his anti-nausea pill. That’s progress. He still has tons of mucus and is not sleeping well because of it. But, his condition will improve in time. It’s just a very difficult illness to live with.

Our biggest prayer request is that Sam’s PET/CT scan on Oct. 20th will be clear. That would be a huge answer to our prayers. I am trying not to hold my breath until October 28th when we get the results of that test… I must remind myself to, “just breathe” and trust God for the outcome.

Thanks to all of you for your comments; cards you sent and email well-wishes. Sam loved it. It’s nice to hear that people are praying and pulling for you.

Joyfully yours,
Maddy

Download/Upload

I wasn’t going to post tonight except that I can't sleep and these feelings are fresh and so in an attempt to be honest about this experience, I decided to try to express my thoughts and feelings in technicolor. From past experience, I am aware that I struggle with Expectation, Perspective and Control. It’s way past midnight and so as not to confuse things, last night (Thursday, Sept. 25th) I found myself suiting up for battle.

It’s hard not to have an expectation of how things might be on the occasion of your 32nd wedding anniversary, but I thought I had my expectations properly scaled back because Sam is so limited in what he can do. (can’t got to out to dinner; can’t have a toast of champagne; can’t have desert and coffee together; didn’t get an anniversary card since he doesn’t drive and is house-bound; watched a couple of hours of TV before he was ready for bed) Mentally I wasn’t expecting much, but as I was downstairs cleaning the cat’s litter box I thought at least I'll get a good night kiss. I heard the TV on and walked into the bedroom to say good night and what I got was Sam coughing up mucus followed by, “I’m sick of this shit. (referring to the mucus) Would you mind getting me another box of Puff tissues?” That kind of broke the mood and I just said, “Sure.”; got the tissues; handed it to him; and turned and closed the door.

Now, I didn’t cry and I wasn't angry, but I began to feel the residue of expectation covering me – momentarily resulting in disappointment.

expectation
1. the act or the state of expecting: to wait in expectation
2. the act or state of looking forward or anticipating.
3. an expectant mental attitude
4. something expected; a thing looked forward to.
5. the degree of probability that something will occur

As I was getting the box of tissues, I did find myself talking to God (under my breath) asking for patience and then reminding myself that I was expecting too much under these circumstances - so I took a dose of perspective.

perspective
1. the state of one's ideas, the facts known to one, etc., in having a meaningful interrelationship
2. a mental view or prospect

When I’m under stress I find cleaning or housework to be a great stress reliever – and, NO, I don’t want to come to your house to clean. So, as I was washing the dishes I knew I needed to try to regain my perspective; and after throwing myself a 5 minute pity-party I realized that I was expecting too much and reminded myself that if Sam wasn’t recovering from cancer treatment things would be different. That doesn’t mean that this situation doesn’t SUCK! It does. It doesn’t mean that I won’t wrestle with these thoughts and feelings again. I will, since my tendency is to want to be in control.

control
1. the act or power of controlling; regulation; domination or command: Who's in control here?
2. check or restraint: Her anger is under control.

As I was trying to sort all this out in my mind in order to keep from going crazy, the concept of downloading and uploading came into my mind. Huh?

Downloading and uploading are words we use in our everyday lives relating to computers. To download is to receive and save data from a remote or central system and the opposite operation, to upload, is to send data from a local system to a remote system.

Since about 1982, I have been downloading to my memory and saving in my heart the Word of God. For over 25 years Sam and I have been attending church; reading the Bible and other topical books; going to Bible studies, Care Group, retreats, marriage seminars, Sunday school, etc.

In Ephesians 6, Paul says we need to “Be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”

So, what does that have to do with anything? The fact is the only things I can control are my thoughts and my actions. I am not saying that this is easy. It is not. In fact, without the help of Christ, I don’t stand a chance. It is very easy and natural to become discouraged under stressful situations. Discouragement made a visit tonight and fortunately, by talking to God, I was able to chase him away.

Uploading now, to you: Are you fortified and prepared to weather the storms that will come in your life?

Your comments are requested.

Not long ago I saw a video of a runner who was several feet from the finish line when he began to collapse. He struggled, crawled and practically willed himself across the finish line. That's kind of where Sam is mentally and physically.

I've never run in any marathons, but I know a few people who have run many and they say that the last 6 miles are run on adrenaline. Sam is fresh out of adrenaline. So, I was thinking that maybe hearing from those of you who are following this blog might just be a shot of adrenaline for him. If you feel inclined to do so, please post a comment for Sam and let him know you are pulling for him. I think that just might be the kind of shot-in-the-arm to help him get to the finish line.

You know, it's weird how a little thing like not getting the fourth can of formula in today almost derailed his progress. He slept-in a little longer this morning and didn't get started until about 11:00 a.m. and so by 10:00 pm he was just finishing his third 8 oz can and he felt defeated. We prayed about it and I tried to reassure him that he did well and that tomorrow will be better. I think he knows that, but he's at the 20 mile mark and kind of "hitting the wall." I know he will make it because he promised me he would fight. Sam keeps his promises.

Sam told me to tell you , "Thanks for your thoughts and prayers." He also wants you to know that he draws strength in knowing that others are thinking of and praying for him.

Dr. Osborn was right - it has been worse than we imagined.

On our very first meeting with Dr. Osborn, she said "base of tongue cancer" is the worst cancer treatment they administer and that if you think you can imagine how bad it will be, think again because it is worse than you can imagine. Well, this experience has lived up to her warning.

Today was a day of frustration and discouragement for Sam. Truthfully, I'm surprised it took him so long to get to this point. He is exhausted from constantly coughing up mucus; not getting enough unbroken sleep and he still has quite a good bit of throat pain. He is extremely thin (about 130 pounds now) from not being able to consume enough calories because of the nausea and looks like he's been in a POW camp. It is difficult to look at him and not be appalled. My only hope is that in a few days he will start to feel better and be able to consume more formula so he can get stronger.

This afternoon, he shook his head and said, "Pathetic, huh?"

I pulled out an old photo album and we looked at pictures of him from 1976 when we first met and I told him that I'm in love with him as much today as I was all those years ago - actually - I love him more now than I did then.

This week we will celebrate our 32nd wedding anniversary and even with all the ups and downs of life, and we have had our share, I can't imagine how I could love him more.

One of our first dates Feb. 1976

Tonight, as he was getting ready for bed he asked me to promise him that I would not become sick. I said I couldn't make that promise. He said he hoped I never have to go through what he's had to go through. I asked him to promise me that he would get better. He said he would. In reality, neither of us has the ability to make those promises come true... it's out of our hands.

A line from the movie, Gone with the Wind, comes to mind: [Scarlett O'Hara]

"I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."

If you pray for us, you might ask God for physical and mental strength for Sam; stamina for me; relief for Sam from the nausea and pain and most of all, grace that is sufficient.

In 2 Corinthians 12: 7-10, Paul talks about having a "thorn in the flesh" (some sort of illness):

"(7) So to keep me from becoming proud, I was given a thorn in my flesh, a
messenger from Satan to torment me and keep me from becoming proud. (8) Three different times I begged the Lord to take it away. (9) Each time he said, “My grace sufficient for you need. My power is made perfect in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. (10) That’s why I delight in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong."

It says in the footnotes, that Paul's illness was unknown because Paul doesn't say. But it kept Paul humble, reminded him of his need for constant contact with God and benefited those around him as they saw God at work in his life.

I can only hope that through this experience others will see God at work in our lives (because we believe He is) and that somehow we might be able to encourage others who are suffering.

Imagine Chemo without Side effects

There is HOPE out there.

From a news story on FoxNews website:
Researcher Seeks Cancer Treatments Without Side Effects
http://www.foxnews.com/story/0,2933,425691,00.html

"Now a University of Arizona scientist has gone off research's beaten path in his efforts to develop breakthrough therapies for cancer and other diseases that will cause no harm while doing good.

Current chemotherapy drugs focus on targeting proteins responsible for a cancer's growth, said Laurence Hurley, the UA Howard Schaeffer endowed chair in pharmaceutical sciences and associate director of the BIO5 Institute."

"By developing a way to look at strands of human DNA in three dimensions, and targeting the DNA with cancer therapies aimed at selected subcell targets, Hurley hopes to cut out the negative side effects of cancer treatments."

Steering clear of "what if" land.

Most people look forward to the weekend. Lately, I dread them. Through this process, weekends have not only brought the possibility of a trip to the ER, but two trips and and an extended stay in the hospital due to dehydration, a high temperature (anything above 100.5 is considered high) and white blood cell issues. And as this weekend approaches, I have started to feel the dreads coming on. While Sam was told that his blood work is mostly satisfactory, his temperature has been slowly rising over the last few days.

At the Cancer Center today, his temp was 100.1 and he was given hydration and now at 6:45 p.m. it is 99.1, which is probably the result of being hydrated. But staying hydrated is challenging for Sam because swallowing is painful and while he will push himself to drink water, it may be difficult for him to consume enough to push back a rising temperature. At this point, I'm not alarmed because we have been able to control his temperature in the past with Tylenol and his radiation and chemo treatments have ended, so I don't expect it to become a problem. But past experiences are not easily forgotten.

I think with this illness or for that matter most challenges in life, it's always the unknowns that cause concern or even "worry". But in dealing with unknowns it's good to recognize that unknowns have two facets. The first is that there will potentially be problems and decisions to make; the second is that the problems and difficult decisions may never arise. A confidant of mine called this practice living in "what if land". And the point is that 90% of the time the "what ifs" never occur and by spending time there you have essentially terrorized yourself for nothing. I hate when I do that! The other 10% of the time, if we trust in God with all of our heart and don't depend on our own understanding as the Bible says in Proverbs 3:5 , He will work it out for us. Not as easy as it sounds, but wise advise.

What I find helpful when I find myself traveling on the road to "what if land" is to be aware of the road signs and make a u-turn when I recognize I have reached that dreaded destination or, better still, to turn back as soon as I recognize the first sign - although I can tell you that the signs are sometimes written in Portuguese - which of course I don't understand.

The next few weeks will contain mind trips with many roads leading to "what if land" and Sam and I are resolved to vigilantly watch for the signs and steer clear of that place. Pray for us that we will remember to trust in the Lord for the outcome. Pray that Sam's temperature will stay under control. Pray that our strength comes from the maker of heaven and not from our own flesh. I am reminded of a chorus we sing at church that was inspired by Psalm 121:

Lift My Eyes Up - by Brian Doerksen

I lift my eyes up to the mountains
Where does my help come from?
My help comes from You,
Maker of heaven, creator of the earth.

Oh how I need You Lord;
You are my only hope;
You’re my only prayer.
So I will wait for You;
To come and rescue me;
Come and give me life.

Psalm 121

I look up to the mountains, does my help come from there?
My help comes from the Lord, who made heaven and earth!
He will not let you stumble; the one who watches over you will not slumber.
Indeed, he who watches over Israel never slumbers or sleeps.
The Lord himself watches over you! The Lord stands beside you as your protective shade.
The sun will not harm you by day, nor the moon at night.
The Lord keeps you from all harm and watches over your life.
The Lord keeps watch over you as you come and go, both now and forever.