Progress Notes

First of all, Sam and I want you to know that we appreciate your prayers for his recovery. It means a lot to us. Sam also has enjoyed being able to go to church services again and visit with our friends there - you have all been a great encouragement to him.

On the Medical Front:
On Sunday, January 25th, Sam and I spoke with a dietitian who is a part of our church’s health care network and she gave us a lot of good information on how Sam can increase his caloric intake to gain weight. According to her charts, Sam needs to take in 2,345 calories per day to gain weight. Since Sam's salivary glands were damaged by the radiation treatments, he has difficulty swallowing anything that is not of a soft or liquid consistency which eliminates a lot of foods he would otherwise enjoy. Also, he continues to have trouble with foods that are sweet which eliminates a lot of calorie dense choices. But, he has started to add oils to the daily formula intake (flax seed oil has 120 calories per tablespoon and other health benefits) and every calorie helps. So, we're learning.

The following day, Monday, Sam had an appointment with his primary care physician with the goal of establishing base line for his continuing care, post-cancer treatments, and to have a resource for general issues that may come up in the future.

Sam weighs 136 now – up seven pounds since he bottomed out at 129 pounds on September 17th; the date of his last radiation treatment. Pretty good progress considering all he has been through.

Sam has developed neuropathy in his fingers and toes and his doctor thought it would be a good idea to get some blood work done to rule out any other possible causes like vitamin B-12 deficiency or diabetic neuropathy. I’m glad he is being thorough.

Sam’s BP was 140/90 initially and 140/70 for the second reading so his doctor suggested we buy a blood pressure monitor and take daily readings to eliminate the possibility that he might have hypertension. The elevated reading could also be caused by "white coat syndrome" or pain.

So, coming up in February Sam will see the Oncologist who will determine if the feeding tube can be removed. If so, he already has an appointment lined up to have that procedure. Then at the end of February its back to the E/N/T who will authorize another PET/CT scan for March. In the meantime, Sam’s job is to fatten up.

We are looking forward to the Superbowl this Sunday and so is our kitty.

GO STEELERS!!!

Posted by Maddy

Black 'n Gold Fever

A group of students from Harmony, PA called "The Pop Rocks" made this video and they’re all between 11 and 13 years old. It's one of the Best Steeler Fight Songs I've heard in a while, take a listen and tell me what you think.

Dr. Visits ahead

Sam's appointment today with E/N/T Dr. Celin (Dr. C) was mostly what we expected, but with a little twist. After examining Sam's tongue, throat and nasal passages, Dr. C seemed pleased and said he can see no evidence of cancer. Operative word is "see." He is not recommending a biopsy. He suggests doing a followup in mid-February with the oncologist and then coming back to see him at the end of February and then either the oncologist or he will order another PET/CT scan. That was music to my ears. I just couldn't see the logic in a biopsy given the randomness of the test.

Sam had a list of questions for Dr. C:

? Why does my jaw hurt when I chew more solid foods, like chicken? Is that because those muscles haven't been used in a while?

Answer: Sounds right.

? My G.I. tube is beginning to have an odor. Should I see the gastroenterologist?

Answer: I think that's a good idea. Maybe you can work toward replacing the formula with food and come off altogether. That might take a while depending on how much food you can eat by mouth and how much you gain.

Note: Sam gained two (2) pounds in a month's time. He now weighs 134#. At 5'11", 154 would be the lower range of normal weight for his height.

? My fingers and toes feel numb. Is that from the drug I'm taking to help generate saliva or because I have a heart murmur?

Answer: My guess is neither. It's probably a side effect from the Cisplatin chemo drug. You can try going off the saliva med for a few days and see if that changes; but my guess is that it's from the chemo.

Of course, the first thing I looked up is Cisplatin side effects. Yep, that's a side effect for 10-29% of patients who are treated with this drug. It's called neuropathy and it is most likely irreversible. This means more doctor visits. There are some drugs that can be given for neuropathy (Amitriptyline). There might be side effects from that drug that would be a contraindication for Sam's condition (example: dry mouth). That's something we can ask the Primary care doctor.

Sam is now scheduled to see his Primary care doctor in a couple of weeks; the Gastroenterologist in February; the Oncologist in mid-February; the E/N/T at the end of February and possibly a Neuropathologist. The PET/CT scan will be in March with a follow-up doctor visit about a week later. Oh, yes, possibly even a dietitian if he doesn't gain enough weight. Whew. We're gonna be busy.

How can you pray for us?

Wisdom for us and for the medical care givers. It's easy to fall between the cracks when you misdiagnose yourself. It pays to ask questions. We are writing our questions out before each doctor visit.

Pray that Sam will gain weight and be able to come off the formula. Patience and perspective is hard to have when you are tired of being ill, but we are a work-in-progress.

Deanna: This picture is for you.

It's cold here!

7 degrees on Friday. Burr!!!

Discouragement pays Maddy a visit…

Usually, when I least expect it, discouragement sneaks up behind me and puts a choke hold on me. Can you picture walking alone at night down a quiet street and wham something/someone comes up from behind and grabs you around the neck? You struggle, not knowing what has happened. You cry out and finally when someone shines a light on the situation you see the culprit clearly.

Saturday, January 10th was not much different than any other day. In the morning it snowed and I wasn’t able to meet a friend for brunch, but I wasn’t upset about that; it’s weather. The afternoon was uneventful. But after dinner something changed in me – it was a feeling. I should know that you can’t trust feelings, but I gave into my thoughts. Looking back, I think maybe the totality of the struggle Sam has been having; not having a clear answer about his condition; having to constantly mentally re-adjust; and our options being so limited caused my psyche to be saturated like a “ShamWow.” I drew inward. I didn’t feel like talking and wasn’t even planning to attend church the next day. Sam worried that he had done something wrong – but it was nothing he had done. It was frustration and this was probably the first time I have felt this way since before Sam’s diagnosis.

Sam wanted to go to church Sunday morning. He has finally come off of all pain medication and was actually able to wake up early enough to attend. This was a big deal and he was looking forward to seeing some friends. Fortunately, we went.

A guest speaker, Dr. Bruce Bickel was giving the message this week. The message was entitled “Hassled, but not defeated.” It was the best 25 minutes I have spent listening to someone in quite a long time. God met my need right then. This was no coincidence.

Dr Bickel referred to II Corinthians 4: 7-18 and addressed these questions: Is there a plan for life’s hassles and what is the purpose? I will not even try to outline his message as I would in no way do it justice. Trust me; it would be infinitely better to listen yourself. If you have ever suffered or are now experiencing discouragement I urge you to listen.

As you read the passage below, read it understanding that we are the jars of clay and the treasure is God in us.

2Co 4:7 - 18
But we have this treasure in clay jars to show that its extraordinary power comes from God and not from us. In every way we're troubled but not crushed, frustrated but not in despair, persecuted but not abandoned, struck down but not destroyed.

We are always carrying around the death of Jesus in our bodies, so that the life of Jesus may be clearly manifested in our bodies. While we are alive, we are constantly being handed over to death for Jesus' sake, so that the life of Jesus may be clearly shown in our dying bodies. And so death is at work in us, but life is at work in you.

Now since we have the same spirit of faith in keeping with what is written-"I believed, and so I spoke"-we also believe, and so we speak. We know that the one who raised the Lord Jesus will also raise us with Jesus and present us to God together with you.

All this is for your sake so that, as his grace spreads, it will increase the thanksgiving of more and more people to the glory of God. That's why we are not discouraged. No, even if our outer man is wearing out, our inner man is being renewed day by day. This light, temporary nature of our suffering is producing for us an eternal weight of glory, far beyond any comparison, because we do not look for things that can be seen but for things that cannot be seen. For things that can be seen are temporary, but things that cannot be seen are eternal.

Dr. Bickel said, “Life is a battleground, not a playground.” True, that!
“In every way we're troubled but not crushed, frustrated but not in despair, persecuted but not abandoned, struck down but not destroyed.”

This is normal living. Everyone has pressures.

The world says: Feel, Act, Think. It’s no wonder that we struggle with feelings. We must remember that we don’t always choose our circumstances, but we are never victims of our circumstances. God says, Think, Act, Feel.

Clay pots are very weak vessels. The value is not the pot itself. The pot’s true value comes from what’s inside the pot. Think about that. God wants to share his life with us and our value doesn’t come from our earthly bodies. Dr. Bickel illustrated; “If someone offers you a glass of water, you don’t say thanks for the glass.”

He explained further that we are vessels through which God puts his life on display and we need to think radically different about how we view all the hassles of life. If the pot cracks and leaks; don’t the contents of the vessel pour out onto things around it? We are the vessel in the circumstance and God wants to give his life away to a lost world and he can do that through us if we have our thinking right.

We are not victims. Discouragement has no hold on me. God used Dr. Bickel to pour himself on me and now I am drenched in God’s love.

I encourage you to be blessed, too. Take 25 minutes and listen to Dr. Bickel’s message. Here’s a link to the website http://northparkepc.org/ The message is on the left side of the page. Let me know if you listen and what you think. I’m listening.

A busy few days...

On New Years Day we visited with our friends Gil and Maria at the assisted living facility where Gil has been recuperating from surgery and we were thrilled to learn that Gil may be being released soon and continue his therapy before they head back to their new home in Kenya. That’s right, Kenya. We wish they would update their blog (linked on our site) telling some of the adventures they have experienced while living in Kenya. There are times we feel like our lives are pretty boring by comparison and we live vicariously through their adventures in a foreign land. But of course, Gil and Maria have their own challenges that we don’t envy.


On Saturday, we attend a memorial funeral service for a fellow church member, Bob Stauffer, and Sam was so pleased to be able to attend. We were out for about four hours and that was pretty hard on Sam from a pain standpoint as he is still dealing with sciatic nerve pain, but Sam wasn’t going to be deterred. Sam admired the courage and grace Bob modeled in dealing with chronic pain – a pain that Sam personally understands. And his wife Marge was someone who, in one conversation, helped Maddy come to terms with Sam’s chronic pain condition. We are truly blessed by the legacy this man built through his love for God.

Sam is still evaluating his ability to consume foods and we had a bit of a scare tonight. Sam was trying some thin cut chicken breast and as he was chewing, he started to feel pain on the side of his face again…. the same kind of pain he experience when his tumor was active. While we were concerned, he decided to try grinding up the chicken in the baby food grinder we recently purchased and that seemed to make chewing easier and alleviated the pain. It’s probably that he just hasn’t used those facial muscles for a while… but we will note it and tell the doctor on our next visit, if the problem persists.

Everybody has challenges, have you noticed that? Just when you think your problems are pretty bad, you hear of someone else’s suffering and your situation doesn’t seem so bad by comparison.

Have you made any New Year resolutions?

While we are not typically ones to make resolutions, we have been inspired to think that maybe this year the best resolution is to live life to the fullest, taking each day as it comes, but with a heart for those who are suffering. And, it seems like we don’t have to look too far to find someone in need.