Friday, August 7, 2009

Blog Boycott

What, no post since June 13th? Have we boycotted our own blog? No, just gathering thoughts and trying to resume a more normal lifestyle.

We have been reflecting on the past year and have some thoughts to share with you on the past year’s experiences.

Reflections of – the way life used to be.

In my very first post on August 5, 2008 entitled: Why Blog, I wrote:

“It is our hope that this blog will allow us to share information and our prayer needs regarding Sam's cancer battle with all who share this journey with us. It is my hope that I will be able to communicate Sam’s progress, what God is doing in our lives and how we see Him work all of this out for our good.

My inspiration for the title of our blog comes from a message I heard at our church, North Park Church, on July 13th by Pastor Bill Meyer, entitled Kingdom Power is Mysterious and Awesome Mark 4:26-34 (http://www.northparkepc.org/).

In that message Pastor Meyer references the Apostle Paul's letter to the Romans chapter 5: 1-5....(Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have obtained our introduction by faith into this grace in which we stand; and we exult in hope of the glory of God. And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.)

Sam and I are standing because of God's grace and mercy.”


Question - Have the "tribulations" we experienced over the last year caused us to persevere, build character, and give us hope that does not disappoint? Absolutely! And, there is no question that we have felt the love of God in our hearts.

After the shock of learning that Sam had cancer and coping with the concept that this has actually happened in our lives – there’s the 35 radiation treatments and 3 rounds of chemo; a feeding tube for 7 months; one hospital stay and several trips to the E.R.; drugs so powerful they made Sam talk incoherently in his sleep not to mention constant nausea and a 41 pound weight drop, managing taking multiple medications several times a day through a feeding tube because he couldn’t swallow; radiation burns and other various doctor tortures, we feel blessed that Sam is in remission and able to have some semblance of a “normal” life. Just getting through the past year alive is a victory.

We do believe that God has worked many things together for our good and we can attest that:

•We are definitely grateful that Sam is alive and in remission.

•We have grown closer as a couple and in our relationship with God.

•We have a new appreciation for living life daily to the fullest.

•We have learned to cast all our cares on God and not worry so much about the small stuff.

•We understand more fully that life is fragile and can be taken from us at any moment.

•We felt the love of our children and our family through their care and concern for us.

•Our prayer life and understanding the benefits of prayer have grown by leaps and bounds.

•We have felt the love of others through all the get-well wishes and prayers offered on our behalf and are grateful for a special “NPC youth leader” and a wonderful neighbor who put legs to their lips by volunteering to help Maddy with some yard tasks that were bigger than she could handle.

•We saw God’s provision financially and were emotionally sustained by His grace through uncertain times.

•We developed relationships and can empathize with others who are ill and for their loved ones who are struggling with all the things that come with illness and loss.

The list could go on and on, so if you are interested in our perspective of thriving in uncertain times, check back as I hope to share more in the upcoming weeks.

Thanks for caring. We couldn't have made it this far without all of your love and prayers.

Maddy and Sam

Saturday, June 13, 2009

Post #93 - In case you were wondering

A friend said today that I haven't posted for a while and I guess that is a good indication of how things are going. Not a lot has changed since post #92 on May 17th, Sam's birthday, and that's a good thing. I'm happy not to have anything dramatic/traumatic to share.... and the everyday mundane things that everyone experience don't make for good blogging.

So, for the update - On Wednesday, June 10th, Sam had a follow up visit with the E/N/T, Dr. Celin and after examining his throat and lymph nodes, etc. he said, "Sam, you look perfect."

I think perfect may be an overstatement, but all things considered Sam looks great.

Since his last visit with Dr. Celin 8 weeks ago he has gained about 2 pounds (he's up to 150 1/2), which is good when you consider what he has to do to swallow food. Due to the fact that the mouth dryness has not improved, he must take small bites of food and masticate it well and then follow each bite with some fluid, unless he's eating soup. You can imagine how quickly you would feel full after consuming so much liquid. And, in order to maintain his weight, he intentionally drinks juice, milk or chocolate milk, or other things that are calorie dense.

But, even with the challenges from his cancer treatments and leg pain Sam does look and feel good so, please don't feel sorry for Sam... he feels very blessed. We were talking about that very subject today; how that six months ago we could not have imagined going out for lunch or that things might ever be routine and mundane again. Someone once said, "The only way to know strong faith is to endure great trials." God's greatest gifts sometimes come through great pain. Has there ever been any great discovery benefiting humankind or anything of value - like our freedoms - that did not require sacrifice and suffering?

Someone named Madame Guyon wrote: "I implore you to not give in to despair. It is a dangerous temptation, because our Adversary has refined it to the point that it is quite subtle. Hopelessness constricts and withers the heart, rendering it unable to sense God's blessings and grace. It also causes you to exaggerate the adversities of life and makes your burdens seem too heavy for you to bear. Yet God's plans for you, and his ways of bringing about His plans, are infinitely wise." (from Streams in the Desert)

In my next post - #94, I hope to have something fun and exciting to report. But I will settle for mundane as long as Sam is still in remission.

Blessing and peace,
Maddy

Sunday, May 17, 2009

Happy Birthday to Sam


Sam is 58 today. We are enthusiaticly celebrating this birthday because of all we have been through in the past year and are thankful that we can celebrate this birthday with his cancer in remission. It is awesome that he can celebrate this day free of a feeding tube and looking as though he had not been through a tremendous battle.

In other news:
About a week ago, our daughter Deanna moved back to Pittsburgh and is living with us again – along with her cat “Rue”. It is wonderful that she is back in the area again and it has been interesting to watch the two cats “Rue and Nico” adjust to one another. They seem to be keeping their respectful distances and only occasionally challenge one another. More stories to come.

We are looking forward to summer and the thoughts of planting a garden again… this time we are hopeful that Sam will be able to enjoy the harvest – unlike last year. That’s a new goal for us.

Please keep us in your prayers and hopefully we will continue to receive encouraging reports from Sam’s physicians.

Saturday, May 2, 2009

Daily Life - A New Normal

Hi All – haven’t updated for a while – mostly because things are somewhat back to “normal”. Sam is adjusting to his new routines. Most changes focus around eating.

The main challenge for Sam is consuming enough daily calories to keep his weight up. He is holding around 150 pounds. His daily routine includes a high calorie shake using the formula that he was taking by tube, ice cream, a Reese’s PB cup and anything else that comes to mind. In general he is still having some difficulty getting certain foods down, but he is managing. He could stand to gain another ten pounds or so, but he isn’t really “skinny” any more – neither am I, but that’s another sad story… ha ha ha

Now that summer is around the corner, I have been trying to learn more about what precautions Sam will need to take regarding sun exposure. I think I read somewhere that people who have received radiation treatments should limit their sun exposure and always wear sun screen. That seems pretty reasonable… and something most of us should do anyway to avoid skin cancers.

One thing that Sam is experiencing now is more hip/leg/foot pain from his back injury and sciatic nerve damage. While he was under chemo/radiation treatments he spent the majority of his time reclined and therefore not as active. Now that he’s feeling better and being a little more active his pain levels have increased and are chronic. It’s just something he has had to learn to live with and most people wouldn’t recognize when his pain levels are elevated – he hides it pretty well.

The next doctor visit scheduled is not until the first week of June and it’s nice to have a break from doctor appointments and it’s another indication of a return to some normalcy.

Thanks for checking in on our blog and please don’t hesitate to leave a comment or a question. Just keep in mind that if you post anonymously I will not have a way to respond.

I’ll post again in a week or two unless there is something to report.

If you think of us please keep us in your prayers.

Blessings,
Maddy

Wednesday, April 8, 2009

Reboot… life after a feeding tube


The smile on Sam’s face tells the story.
The feeding tube removal went smoothly and while there was some discomfort when Dr. Thomas pulled the tube out, there was relatively little pain afterward and even more amazingly, no restrictions on eating or drinking. I think we both thought Sam would spring a leak like a scene from a cartoon – but apparently the stomach heals over very quickly and there was no leakage.

However, the wound site looks like Sam was hit with an arrow and it will take a little longer to close up. It almost looks like he has two belly buttons. I told him he would be able to tell his grandchildren tall tales one day. Of course, we would have to have grandchildren for that to happen. No pressure, of course, on our children.

On Tuesday, April 7 th, Sam was examined by his E/N/T, Dr. Celin, who again said he saw no evidence of disease. This is a phrase we love hearing. We asked if Sam would continue to improve and his answer was non-committal. He said that most improvements occur in the first six months following treatment, but smaller changes could continue to occur up to 18 months after the cancer treatments end. It’s been almost 7 months since Sam’s final radiation and chemo treatments and he has recently noticed some increased ability to swallow larger quantities of food in one bite.

We continue to pray that his saliva production would increase because his limited saliva production is still hampering his eating/swallowing, but he is trying to adapt and I’m always impressed that doesn’t complain. Also, he now weighs 148 pounds – a 19 pound gain from his lowest weight in September 2008.

The best part of Sam’s feeding tube removal for me is that I can hug my honey again without having to worry about his tube being in the way or hurting him. It’s the little things that become precious.

I’ll close with a quote from Streams in the Desert by L.B. Cowman: “This is the blessed life – not anxious to see far down the road nor overly concerned about the next step, not eager to choose the path nor weighted down with the heavy responsibilities of the future, but quietly following the Shepherd, one step at a time.”

Our love to all,
Maddy

Sunday, March 29, 2009

Turn a page

April 1, 2009 - Sam is scheduled to have his feeding tube removed after seven months. NO JOKE!

It's interesting how this event is almost more of a celabratory event for us than the news about the results of the PET/CT scan. You may wonder how that could be, but when we stopped to analyze our feelings about our joint reaction to the results - we had more of a "Whew!" reaction than "Woo-hoo!".

I tried to explain this to a friend this way... it's like we've been being chased by a monster and we are running for our lives and we manage to barely escape... but we suspect the monster could return and try to scare the crap out of us again. It's kind of like that.. Whew!

For the past week, Sam has been logging his calories trying to consume 2300 calories/day so that he can maintain his weight.... without using the feeding tube... and he has been able to do that. Honestly, it's not been as easy as you might think in that he has trouble swallowing most solid/dry foods. (All the women out there like me who can look at food and gain weight - don't feel his pain, I know - poor boy.) But, he is really hot to get this tube out... especially since the test shows Sam to be in remission.

For the first time in a long time, there is an opportunity to do "normal things" again. I'll tell you about that in another post.....

Wednesday will be a page turner day! We can hardly wait.

Thanks for being our prayer support.

Tuesday, March 24, 2009

And the news is...

Great!

Sam's PET/CT scan is clean!!!!! No sign of any abnormalities.

We are relieved to get this news and we are hopeful that he will continue to remain cancer-free. Sam is looking forward to the next step which is getting the feeding tube removed and he plans to call the GI specialist to try to get that scheduled soon.

Thanks so much for for your prayers on our behalf - and we are grateful for you all.

Monday, March 23, 2009

Nothing to Report - Monday 3/23/09

This morning Sam called the office where he sees the ENT, but he was not it that office today. They said they would forward the message, but as of this moment we have not received a call back. Sam plans to call tomorrow morning if he does not hear from the doctor first. I will post something as soon as the answer comes.

The waiting is always the hardest part. For myself, I would just like to know - good or bad. I would have called last Thursday, but it's not my place to call for Sam and I think he' s happier not knowing. Figures; we're opposites.

Yes, honestly I am going a little crazy. Not quite in the "Red Zone" as Cesar Milan would say, but almost. Don't know who Cesar Milan is? He's the Dog Whisperer on the National Geographic Channel and works with animals that are out of control:



Why the video... well, last Friday, when we didn't have an answer, I thought to myself, I need to be distracted so I don't focus on the test. I don't know why, but I thought about the Dog Whisperer and how when Cesar wants to redirect obsession or aggression he uses distraction. So, we went out for Sushi - it worked for a little while.

Praying works the best and we are doing a lot of that. If you are inclined, we would appreciate it if you would shoot up an arrow prayer for us. We are praying for good news.

Maddy

Friday, March 20, 2009

No News Yet - Friday 3/20/09

We have not gotten a call from the doctor with the results of Sam's Pet Scan a week ago. The technician did tell Sam that it could take 5 working days... so, we are waiting patiently - or not so patiently depending on the hour and amount of distractions.

As soon as we know anything, we will post.

Thanks for praying for us.

Thursday, March 12, 2009

PET/CT Scan

Sam is scheduled to report to the UPMC Imaging Center tomorrow (Friday, 3/13/09) for bloodwork and hopefully, if his numbers are okay, he will begin procedures for the PET/CT Scan.

Positron Emission Tomography – Computed Tomography (PET/CT)
For the detail types reading this blog, here is a description of this procedure:
Depending on the type of nuclear medicine exam you are undergoing, the radiotracer is either injected into a vein, swallowed (Sam's will be swallowed) or inhaled as a gas and eventually accumulates in the organ or area of your body being examined, where it gives off energy in the form of gamma rays. This energy is detected by a device called a gamma camera, a (positron emission tomography) PET scanner and/or probe. These devices work together with a computer to measure the amount of radiotracer absorbed by your body and to produce special pictures offering details on both the structure and function of organs and tissues.

A PET scan measures important body functions, such as blood flow, oxygen use, and sugar (glucose) metabolism, to help doctors evaluate how well organs and tissues are functioning.
CT imaging uses special x-ray equipment, and in some cases a contrast material, to produce multiple images or pictures of the inside of the body. These images can then be interpreted by a radiologist on a computer monitor as printed images.


If you want to read more about it, here's the link to the site where I got this information: http://www.radiologyinfo.org/en/info.cfm?PG=pet

We are looking forward to getting the results of this test with the hope that if there is no evidence of cancer, Sam may be able to have his feeding tube removed. That would be a huge step in his recovery process and we are hopeful that his test will be clear.

The one thing we have been told is that this cancer or secondary cancers can return, so we are still taking things one Dr. visit at a time. But, Sam is improving and that is something to hold on to. He is still having trouble swallowing food and has to constantly drink water/juice or other liquids to move the foods along and to keep his throat moist, but he is beginning to accept this new wrinkle of life. Challenging as that is, he is grateful to be alive and is coping.

We will not have any results of these scans until sometime next week, but I will post as soon as we hear from the physician. We are praying for some positive news.

Monday, March 2, 2009

A year ago



A year ago March 1, 2008, Sam and I were sailing off on our long awaited Caribbean Cruise... not a care in the world. Little did we know what was ahead in the coming few months.

march 1, 2008 - Radiance of the Seas

Some people think they'd like to be able to know the future -- you know, the ones who go to a fortune teller and/or have their palm read... trust me, it's better to not know. I don't think we would have been able to enjoy our trip quite as much if we knew what was ahead. I'm just sayin'.


March 1, 2009 - Phipps Conservatory

I think Sam looks great. Anyone passing by would never know by looking at him the valley he has walked through the last six months while being treated for Squamous Cell Carcinoma - Base of Tongue Cancer.

I imagine that most people following this blog might think that the toughest part of cancer is what happens physically because of the obvious physical changes you've seen, but the mental/emotional aspects are just as challenging; not only for the person with cancer, but the people closest to them. This experience challenges you and brings out the worst and best. It forces you to face lots of things about life and death - what you expect; how you think life should be and what to do when it doesn't go your way.

With what we've been through, it is hard for us to imagine how anyone could cope without a personal relationship with God.

A few nights ago, we were both lamenting how tired we were of all of this - especially the thought that this disease will be a part of our lives for a long time to come. As we talked for a while we tried to get things back into focus... you know, focusing on how far Sam has come and realizing that its unrealistic to expect him to be better faster than things are going and that there are others who have been and are going through worse things than we are going through. We were starting to come to terms with the reality of our situation and then we read something written in 1925 by L.B. Cowman that inspired us and not only helped us put things in perspective but brought back our joy.

2 Corinthians 12:9 - My grace is sufficient for you.
[Quote- L.B. Cowman]
"I pictured a thirsty little fish who was concerned about drinking the river dry with Father River saying, "Drink away, little fish; my stream is sufficient for you." I also envisioned a mouse afraid of starving after seven years of plenty, when Joseph says to him "Cheer up little mouse; my granaries are sufficient for you." Again, I imagined a man high on a mountain peak, saying to himself, "I breathe so many cubic feet of air every year, I am afraid I will deplete all the oxygen in the atmosphere." But the earth says to him, "Breathe away, filling your lungs forever; my atmosphere is sufficient for you."

O people of God, be great believers! Little faith will bring your souls to heaven, but great faith will bring heaven to your souls. (Charles Spurgeon)
[End Quote]

This is the GRACE in which Sam and I stand and it is more than sufficient for all our problems, needs and concerns. All we must do is draw from the all sufficient fountain.

If you are struggling, we encourage you to ask God to give you the grace and faith you need and he will give it to you in full measure - pressed down, shaken together.

Tuesday, February 24, 2009

Chugging along...

Sam’s appointment today with his E/N/T, Dr. Celin, went well.

Dr. Celin said he like the way Sam appeared and, after examining him with a Fiberoptic Laryngoscope and then physically examining his tongue, he said did not detect any problems.
He also told us that he prefers to do physical exams because he said he can generally detect head and neck tumors at fairly early stages by exams and that Oncologists tend to use more frequent PET/CT Scans for their diagnoses.

In the interest of being proactive, Dr. Celin schedules follow up appointments every 6 weeks the first year, then every 3 months the next year and then every 6 months – ongoing – unless any secondary cancers occur – then it’s back to every 6 weeks. He said that if this cancer returns, it most usually recurs in the first two years after treatment, but he has seen patients with a recurrence at six years out. Also, he feels that it is easier to keep track of the changes in the patient with more frequent exams. We concur.

After a few questions that were minor in nature, i.e. dealing with acid reflux and saliva deficiency, Sam asked if Dr. Celin would call with the results of the PET/CT. Sam related the feelings he had regarding the Oncologist and Dr. Celin suggested that it’s probably a style issue and that he sometimes finds that some patients are better suited to other physicians. So, that validates the idea of changing Oncologists if we continue to be unhappy with that physician. Anyway, we’re glad he will be the one to call.

Sam’s weight is holding at 145 pounds which means he has not gained any weight in the past two weeks – but he hasn’t lost any weight either.

Overall, after this visit, we feel like Sam’s on track but we continue to pray to prepare our hearts for any possible derailments. Prayer is the power for peace.

Saturday, February 21, 2009

Making Progress

From Oct. 2008 to Feb. 2009
Sam is on the mend. It's great to see the physical evidence, isn't it? He feels a lot better too. He is still experiencing neuropathy in his fingertips and toes, but it hasn’t gotten worse and is manageable without medication. We are hoping that it will diminish over time.

We are happy to report that Sam is making progress with eating. While most of his meals still consist of soft foods and he still needs to have something to drink after each spoonful of food to be able to swallow; food is palatable to him again. He reluctantly tried apple juice today for the first time since September and to his surprise, it tasted like apple juice.

The desire of Sam’s heart is to have the feeding tube removed - but that most likely won't happen until after the results are in on the PET/CT scan which has now been scheduled for March 13th.

Our prayer is that the scan will be clean. What else can I say? I don't think I (Maddy) am prepared for anything else. With the progress Sam's making, it would certainly be tough to take. But, we have hope and we believe that he will be fine. God will give us the strength we need to deal with any other scenario.

One of the challenges of this cancer experience has been waiting for test results. Our natural desire is to want answers immediately and it is difficult wait. But, we have found that focusing on daily living has a peace to it that keeps you from being anxious about what the future might bring. After all, no amount of worrying will change the outcome of the test. So, it's good to live the best day you can live today and look forward to another best day tomorrow.

We are grateful for your prayers for Sam – it seems to us that they are being answered.

Friday, February 13, 2009

Quick Update

On Tuesday 2/10/09 Sam had a follow-up appointment with his Oncologist. It was strange.

Nothing bad… just strange.

After waiting an hour to be seen, Sam was examined by the “Physician Assistant”. Sam told her about the development of the neuropathy in his fingers and toes. He also told her about his visit to his primary care doctor who ruled out B-12 deficiency and diabetic neuropathy and that the E/N/T suggesting it was the Cisplatin. She (the P.A.) agreed that that was the likely cause. Then struts in the Oncologist who said, “This is odd. I treat with this drug a lot and I haven’t found that it occurs this long (3 months) after being given.”

Sam and I just looked at her in amazement. Fortunately, Sam spoke up and said, “Well, we looked it up online and it said that it’s common for neuropathy to occur 3-5 months after Cisplatin is administered.” I wanted to squeeze him because he usually doesn’t challenge doctors.
Here’s one example:
http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_040307/page7
“Chronic peripheral neuropathy may arise weeks or months after chemotherapy treatment and may be very difficult to treat; in some patients, it may be irreversible.”

Anyway, the Oncologist then said something like, that’s probably what it is from.
Annoyed, much? Good guess.

Next steps: Another visit to the E/N/T on 2/24/09 and then a PET/CT will be scheduled for mid-March.

The best surprise of the office visit was the weigh-in. Sam’s weight is now 145.5 pounds. That’s up 16 pounds from September 17th. Pretty soon we’ll have to put him on a diet.

Well, Happy Valentines Day to all our loved ones and friends. Thanks for remembering us before the Throne of Grace. We love you all.

Sunday, February 8, 2009

We’re havin’ some fun now.

Our daughter Deanna came in for the weekend and it’s been great visiting with her. The last time she was in town since she moved to Arizona was August 2008 after Sam was just starting his chemo/radiation treatments. So it was great for Sam to see his “little girl” and for Deanna to see that her Dad is making progress. It’s hard to see that kind of progress over the phone or by video conferencing.

Sam also thought that since Deanna was coming in, she could give us a hand with a little home repair project that we knew would soon become a problem if it wasn’t addressed. We have a well and it has produced well for us (no pun intended) in the twenty years we’ve been here. Fifteen years ago we (Sam, Max and Maddy) replaced the pump and foot valve and recently it has been making noises that indicated we were going to have a problem soon… and, trust me, it wouldn’t be any fun for the pump to stop in the middle of a morning shower.

Sam was kind of excited to have a “little project” that he could tackle (it’s a guy thing) and he thought it would take just a few hours to complete – with Deanna’s help this time. But, you know the expression, “when it rains, it pours.” This weekend we had a monsoon of sorts.

Our well is 80 feet deep and there is a little “foot” valve at the bottom of the well that keeps the pressure in the tubing so the pump can draw the water up. After pulling up the 80 feet of tubing with the aid of our Subaru and some grunt work by Deanna and Sam, we assembled the parts fairly quickly, got everything back in the ground and quickly realized that there was a problem after we poured 50 gallons of water into the tubing and it seemed to be leaking out of the tubes. We had to pull it back up again and start over. The foot valve cover came off and got stuck in the open position not allowing the tubes to hold pressure.



Without going into a bunch of details, that little 2 hour project took us two days to fix. It all seems to be working now, thank God. Sam was pretty worn out by the whole ordeal, but I know it’s a load off his mind and is another indication that he’s making progress toward his recovery.

Sam has been experimenting with a variety of foods to try to expand what he can eat with the goal of eventually getting off the food pump. We will see the Oncologist on Tuesday (2/10/09) for a follow up and to try to get a sense of when the tube can be removed. My guess is that it will stay in until after the results of the next PET/CT scan in March.

We are certainly looking forward to spring and some good news - but I'll take wrestling with a well pump over cancer any day.

Tuesday, January 27, 2009

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

Wednesday, January 21, 2009

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.

Tuesday, January 13, 2009

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!!!

Monday, January 12, 2009

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.

Sunday, January 4, 2009

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.