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."