Getting to 98.6

This has been a rough morning.

7:45 am and Sam is burning up with a fever of 101.8, he has nausea and is probably dehydrated. He's really sick. For the next several hours it is a battle to get his temperature down and by 12:30 pm it is 98.8. Thank you, Lord!!!!

Cold compresses, Advil, Tylenol, Ice Chips, Shower, Formula, Meds - 6 different ones! It's a full-time job.

It's now 1:15 pm and Sam is starting his drip feed. He will be connected to that pump until 11:00 pm tonight trying to ingest three 8 oz cans for a total of 1125 calories and with the morning feed of 250 calories from 1/2 can of the other formula, he will take in 1375 calories today. That's the most he's been able to consume; not good enough to keep his weight up, but we'll take it.

This day has been hard for me. I miss my bright-eyed husband. I went to give him a hug this morning and I accidentially squeezed him too hard and it hurt his neck. I cried. I needed to. Sam comforted me - ironic, since I was trying to comfort him. All of this is hard to take sometimes. But, we press on and pray hard. I know God is listening and I remember Romans 5:3-5 "we rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character hope. And hope does not dissapoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." We hope in God.

This will be a long "holiday" weekend of temperature checks and meds management, but Sam only has 9 more radiation treatments and one last chemo before he gets a break from the treatments. Then the long wait will begin to see if it worked. But, that's too far in the future. It's best to live in the moment for this process. The hardest part is yet to come - the chemo. What does the Bible say in Matthew 6, vs. 34... "Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Truth.

There is lots to do around the house to keep me busy while Sam sleeps. I am grateful to be busy.

The only thing constant is change.

Last week, Sam was still occasionally taking food/juice by mouth. Now that it's hard to swallow, and things taste so terrible, he's now taking some medicine through his tube.

He's getting to be proficient at this.



There is a little port on the side of his feeding tube and he can syringe the medication that's supposed to help with digestion, etc. at the same time he is feeding through the tube. Pretty slick! Several days ago, when he swallowed the medication, it burned his throat, so, this is a little blessing.

We had a lovely visit with Bill Meyer who has been the Interim Pastor at North Park Church. He has a beautiful servant's heart and has reached out to us and been used by God to bless our hearts. We will miss him, but we hope to see visit him and his wife, Nancy, in Clearwater Florida when Sam is able. It would be nice to fulfill that goal.

Sam's temperature is still elevated again today, but the Tylenol has been controling it so the nurses don't seem to be alarmed. It's preying on Sam's mind, a bit, so that would be an area where he could use prayer support.

I would like to say thanks again, for the cards we have received. It is a wonderful treat to receive an encouragement, knowing that someone took time out of their day to think of us. It humbles me and convict's me to remember others who are fighting illnesses or depression. It is so easy to be caught up in our day-to-day routines and lose the opportunity to cheer up someone who is hurting. My bad. I confess, and repent. Thanks God for your forgiveness and grace. 1 John 1:9 - "If we confess our sins, he is able to forgive us and cleanse us from all unrighteousness." And he will keep on forgiving and giving his grace, each time we confess. Isn't that awesome to know?

A bittersweet harvest

Last year my father gave me about 16 tomato plants and 12 pepper plants and because Sam and I love pepper sandwiches and because there is nothing like the taste of tomatoes from a garden, I had no other option than to plant a garden. Building on the success of last year’s crop, this Spring we got serious about our peppers and were looking forward to the harvest.

This crop is bittersweet.

Sam won’t get to enjoy this harvest – his taste buds are fried from the radiation now. It’s my prayer that in a few weeks or months his ability to taste will return. Anyone who knows Sam knows he loves cooking and eating. It was one of life’s little pleasures for him and it always irritated me that he could pack away the food and never gain a pound.

As I was picking more grape tomatoes tonight, I marveled at the incredible miracle of a seed. How can so much fruit come from one seed planted in dirt? But an abundant harvest really doesn’t happen without some work. Anyone who gardens knows that without weeding, watering, hoeing, bug spray and proper soil, you won’t produce a good crop…. I found that out with my zucchini… crappy soil, I think. Picking the grape tomatoes reminded me that relationships are like gardening too. God is working on my heart about that, but I’ll share that some other time.

Sam has been battling a low grade fever since this past weekend and every couple of hours I was taking his temperature and pushing Tylenol, as you read in my last post. Sam humored me, but I think he was beginning to compare me to Nurse Ratched (think, One Flew Over the Cuckoo’s Nest).

We were happy to learn today that the blood work they did on Monday was normal. The nurse said that if the fever continues they will do a culture to make sure he doesn’t have an infection.

I asked Sam today, what is difficult for him. He told me that it’s just the duration. He is getting weary of the cure. To quote Gavin Sinclair from his book All Things Work for Good, “The only thing worse than dying of cancer is being cured of it.” I pray that God will give Sam the endurance he needs to fight this battle. It is a fierce one.

It’s confirmed, liquid Advil tastes awful.

Last week my co-worker, Tom, decided to chew a liquid Advil gel capsule just to see what it would taste like. His face contorted in disgust and he said it was the worst taste he’s ever tasted and didn’t recommend the experiment to anyone. Yesterday, Sam confirmed Tom’s claim.

After battling a low grade fever yesterday and several hours after taking a Tylenol, Sam’s fever was still elevated so I suggested he take an Advil to try to bring his temp down. Well, apparently, the gel cap got stuck in his throat, dissolved enough to release the liquid, and eventually after he vomited up the gel cap, he realized why he was experiencing the most disgusting taste ever. This morning at 7:30 am his temp is still elevated at 100.4, but I think we can manage it with Tylenol. On Friday the nurse told Sam that if his temperature went above 100.5 he should call the doctor on duty. Friday night at 7:00 pm his temp went up to 100.7; I gave him Tylenol and we called the doctor. After several questions about his symptoms, he suggested Tylenol. The verdict - the chemo is doing a job on the red and white blood cells. We must be vigilant.

I was hoping to attend church today as this is the last Sunday our interim pastor, Bill Meyer and his wife Nancy, will be with us. They are moving back to Clearwater. In the short time they have been at North Park Church, we have been blessed by their love and ministry. Bill’s sermons have been a blessing, but the way he puts action to his stated beliefs is the real thing and we will miss him. Well done, good and faithful servant.

I have been busying myself with yard projects and have just about finished the patio project I started before the true identity of Sam’s illness was revealed. Before

After

My goal was to have a spot where we can sit out and enjoy the humming birds and butterfly activity. My hope is that we can keep Nico the cat from eating them. Two days ago, she walked by me with a butterfly in her mouth - wings still flapping - and I coaxed her to let it go... fortunately it flew away.

This morning we thank God for the prayers of our family and friends, the beautiful weekend, the blessing of Tylenol and the great love that he has for us. What are you thankful for?

Hello Video!

Cool Dude, Sam Karpiak
March 6, 2008 in St. Marten

Well gang, this is the best I could do to get the video uploaded. When you click on the link below, you should be able to view it. Please let me know if it doesn't work for you.

http://video.google.com/videoplay?docid=9073904315569288828&hl=en

Sam's voice may sound different to you - that's from the radiation he's receiving to his neck and is normal at this stage of his treatment.

Late in the day today, we received a shipment of the new Formula that Sam will try and hopefully he will be able to better tolerate this brand. It's different from the Nutren in that it doesn't have any cow's milk (it has soy) and it has less calories per can. It's worth a shot. He needs the nutrition badly and can't really afford to lose more weight.

Please feel free to leave comments on the blog or send email. We love to hear from you.

Please pray for me (Maddy) for strength, as my stress level is increasing. I'm glad the work week is almost over as I'm looking forward to a nice, sunny weekend in the "burgh".

Love to all,
Maddy and Sam

Hello from Sam

Maddy tried for hours to upload the video of me that she shot tonight, but unfortunately it wouldn't upload, so she typed up the gist of what I said, below:

Some thoughts from Sam –
I want to thank everyone for your prayers; good thoughts; caring hearts and for all the cards I’ve received.

My continued prayer needs are for– physical, mental and spiritual strength; and wisdom for the doctors and nurses caring for me.

Pray that God will give me boldness and the words to say to comfort the people I interact with at the hospital – some who have more advanced cancers and don’t have the hope I have in Christ.

I want my family and friends to know how encouraging it is to know they are praying for me and it’s encouraging to receive their heartfelt expressions of love and concern.

I want you to know I’m fighting the good fight with the grace of God and looking forward to having some normalcy in our lives again – like not having a tube in my stomach ---- but I’m thankful it’s not worse and am encouraged that the doctors seem to feel that they caught this in time.

Things I’m looking forward to: seeing my children over the holidays; seeing my family in Philly again - hopefully next summer – maybe down at the shore. I’m looking forward to being able to chew foods again and to be able to taste and have things smell the way they should.

When this is over, though, I’ll have a fantastic testimony to tell how the power of pray has strengthened me through this ordeal.

Love to all.

Sam

PS. If you have any tips or tricks for getting the video to post, please email Maddy at romans.5@hotmail.com

Dark Humor

While doing some research on the chemo drug Cisplatin I came across a story today about a throat cancer survivor and for some stupid reason his wife's description of the treatment made me laugh. Here's the quote:

"After the second chemo treatment to sum it up: "First we'll hit you on the head with a hammer, then we'll light you on fire.""


It think it was the light you on fire part... for some reason it made me think of our son, Max. He was a bit of a pyromaniac as a little boy.


But, this cancer treatment (poisoning) is a bit barbaric, and I don't know why the quote made me laugh... probably just a stress reliever timer went off in my head and I laughed because on some sad level I could relate to her statement.

Maddy

Just a quick note...

Nothing much new today. All the issues are the same. Sam did talk with the dietitian and she is looking into changing his tube feeding formula, but has to get a prescription from the oncologist. That approval might mean that his formula will either be changed tomorrow or Thursday. Pray that a change in formula might mean he can eat more. He needs the calories, badly. Today his calorie intake will be about 1000 calories.

Sam now sounds like he is getting laryngitis. Swallowing is becoming more painful, but he is still following doctor's orders and sipping liquids while using the feeding tube.

If I can figure out how, I am hoping to post a video tomorrow so check back tomorrow or Thursday for a short video hello from Sam.

Fondly,
Maddy and Sam

Technology & Other Modern Marvels

Technology can be very useful when you are trying to stay organized. I know I sound like “Mr. Obvious”, but I’ve been printing out an Outlook Calendar sheet for Sam every day with the times for his meds or van pickup times, etc. Then, at the end of the day, I transcribe his scribblings throughout the day; for example: his vital signs when he’s at the Cancer Center or how much formula he’s had and food and fluids he’s had during the day or any side effects. It really comes in handy when the nurses, doctors or dietitians start quizzing Sam.

So, an update on the day – the morning had its pluses and minuses – on the plus side, Sam finally had a productive elimination (fancy way of saying poop); on the minus side, he had the dry heaves and then threw up. But, before he left for his radiation treatment he was able to take in a half feeding (250 calories). I swear I don’t know how he is functioning on so few calories. I think it is shear will-power!

They hydrated him again today and gave him magnesium, too, but he wasn’t given the Ethyol shot because of the nausea.

I think Sam has mastered the operation of the drip feed unit called a “Joey Kangaroo Pump.” But he is still having difficulty digesting the formula prescribed. Tomorrow he is going to consult with the dietitian to see if there is another type of formula he could try to see if it might be more easily digestible. They are recommending 4 cans a day (2000 calories) and since July 30th, the most he has been able to consume is 2 ½ cans. That’s only 1250 calories and he’s 5’11”. That’s not nearly enough to keep from losing weight. So, this needs to be addressed.

The radiation is beginning to make his throat sore and it’s uncomfortable for him to talk a lot. His voice sounds gravelly (is that a word?).

So, you might be wondering how to pray for Sam. Last night, on his way to bed, he said, “I’m sorry to put you through this.” I reminded him that he would be doing the same for me, if the shoe was on the other foot, but I think he was expressing how this is affecting him emotionally. He doesn’t really speak about his feelings, but if you read between the lines, he probably feels like he’s a burden to me – which of course, is not the case. I’m reminded of what Bob Hopper (our former Pastor) would say; “Cheer up, you are worse than you think, but God’s grace is greater than we can ever know.”

It’s fitting that Sam’s been clinging to 2 Corinthians 12: My grace is sufficient for you, for My strength is made perfect in weakness.” Pray that God gives Sam physical strength, peace, joy, hope and the gift of abundant grace as he may be struggling with feelings of discouragement or disbelief or depression or only God’s knows what, as there are some things I’m sure he’s not sharing with me. Pray also, that they can determine what the problem is with the formula intake. That is becoming a problem.

Finally, we send our love to all of you and we pray that God will bless you for your faithful prayers.

Maddy

Never a Dull Moment

It's 3:00 pm and we just got back from 5 ½ hours at the emergency room. At 7:15 am as I was getting up for church, Sam said that he didn’t want me to go cause he wasn’t sure what was going to happen to him. At 3:15 am, he vomited and again at 7:30 am. So we called the Cancer Center and spoke with Dr. Osborn who just happened to be on call. She suggested that we consider the ER if he didn’t feel better. Well, knowing Sam, just the fact that he was considering the hospital told me that we should have already left. He’s not the type to run off to the hospital with sore eyelashes, if you know what I mean.

As it turns out, he missed three doses of his pain medication yesterday and that (causes nausea) in addition to the chemo (which causes nausea) and being dehydrated caused him to feel very bad, indeed. Fortunately, the blood work-up was okay; they did an X-ray of his stomach to make sure there was no blockages (there wasn’t); but he was dehydrated and so they gave him 2 bags (1000 ml each) of sodium chloride. We left the hospital at 2:45 pm.

I was able to coax Sam to take one feeding and he’s still wiped out, but resting comfortably now. Thank God!

Slow motion.

Sam had a follow-up visit with the E/N/T, Dr. Celin. today, August 16, 2008. He said the lymph nodes are definitely decreased in size and Sam appears the way Dr. Celin expected him to look at this stage of the treatment – pretty beaten up.

One of the reasons for the visit is that Sam is noticing some change in his hearing - as though people are talking into a tin can. Dr. Celin said the chemo drug, Cisplatin, is the culprit and ordered a hearing test. The test showed that he has some high-pitch sound loss, but not permanent nerve damage at this point. He wants to see Sam again after the next (and hopefully final) round of chemo. The audiologist who tested Sam said that if nerve damage occurs from Cisplatin, it is not reversible – but its benefits outweigh the risk at this point.

We are back home and I am feeling frustrated. Sam doesn’t want to use the feeding unit because he wants to rest. I’m concerned because he only had 250 calories this morning at 9:00 am – it’s now 1:35 pm. I can’t seem to get through to him that nutrition is important. Ugh!!!! You can lead a horse to water, as they say. He’s taking a nap and I’m taking a break by doing a project outside.

Finally, Sam’s up from his nap and has started on the feeding unit. Yesterday he was able to take in 2 ½ cans (that’s 1200 calories). The dietitian’s recommendations are 2400 calories/day – which is 4 cans of formula plus anything he can eat by mouth. The goal is for him not to lose any more weight.

So, how does he feel? Like crap - and still battling nausea. This is no fun for either of us. It’s like our lives are on hold and we are in slow-motion. Well, if the first chemo experience is any indication of how Sam will feel, it’s going to be a long week.

Having said all that, what can I praise God for today? First, that my husband is still alive and fighting on and by God’s grace he will get through this. Second, he's the love of my life and in a few more weeks we will celebrate our 32nd wedding anniversary. We are blessed indeed.

What doesn't kill you makes you stronger?

Sam had a pretty rough day today, August 14th, and if his first chemo treatment was any indication of how things will go this time; over the weekend he will feel worse. I hope I'm wrong.

Cisplatin is the chemo drug Sam was given again on Tuesday. Wednesday the nausea symptoms were a little worse and today they were worse yet. One of the side effects of this drug is hypomagnesemia and Sam's levels were low enough today that he needed an IV push of Magnesium.

It's funny how we go about our daily lives without giving much thought to the incredible inner workings of our body. I read in an article that Magnesium is needed for more than 300 biochemical reactions in the body.

The article also said that, "Magnesium is a mineral needed by every cell of your body. About half of your body's magnesium stores are found inside cells of body tissues and organs, and half are combined with calcium and phosphorus in bone. Only 1% of the magnesium in your body is found in blood. Your body works very hard to keep blood levels of magnesium constant."

"The danger of Magnesium deficiency can cause metabolic changes that may contribute to heart attacks and strokes. There is also evidence that low body stores of magnesium increase the risk of abnormal heart rhythms, which may increase the risk of complications associated with a heart attack."

So, the lesson is - eat your dark green, leafy vegetables, almonds, brown rice, bananas, dried apricots, and avocados.

If you want to read more about magnesium: http://www.emedicine.com/emerg/TOPIC274.HTM
http://journals.elsevierhealth.com/periodicals/ymai/article/abstracts

Fortunately, as Nurse Nanette told us on Tuesday, they have treated enough people to know what to look for and I feel pretty confident that they are on top of this issue.

The outcome of Sam's meeting with Shelly, the dietitian, was predictable. Sam was not able to increase his food intake enough and she has ordered a drip-feed unit. The visiting nurse will come tomorrow and will work out how Sam will use the equipment. Apparently part of the magnesium problem came about because he's not eating enough to keep his magnesium levels up. So, hopefully taking food more slowly through a drip-feed will be the answer.

So, we pray. Pray for physical strength for Sam and that he will be able to increase his food intake with the change to the drip-feed method. We thank God that we are blessed with such good medical care for Sam.

Maddy

Hair loss - It was only a matter of time.

Before and After

Vanity, vanity, all is vanity. No, not with Sam. He's the least vain person I've ever known. Yesterday, well actually Monday August 11th, Sam began to notice some black hairs on his shirt... but he thought it was cat hair. Poor Nico, our cat, got blamed, but then on Tuesday at the hospital his hair was coming out in globs - kind of like when a cat sheds.

Dr. Chen (Sam's radiologist) told us at our first meeting that Sam would most likely develop a different hair style from the radiation.

It's not really a problem for Sam - he took it in his stride.

I'll just give him a haircut in a few days and - Voila, problem solved.

Two down, one to Go!

August 12, 2008. All systems were a “go” today for Sam’s second-of-three Chemo treatments. We reported to the hospital at 8:30 am and like a well oiled machine, the nurses began the regimen: Temperature – okay; Blood Pressure – okay; Weight – 146 (up a pound – must be the picnic food); blood work done the day before was adequate and so he is cleared for Chemo.

Here comes Nannette, RN, with a needle and rubber strap looking for a vein – Whew, success! Finally, after an hour, the IV hydration fluids with anti-nausea drugs are underway. An hour later he’s wisked off to see Dr. Osborn, the oncologist.

Article on Dr. Osborn and Dr. Chen UPMC Cancer Center/Passavant Hospital:
http://www.mkmcopywriting.com/portfolio/marketing/200503-marketingarticle.pdf

Dr. Jennifer Osborn, a petite dynamo, is Sam’s Oncologist. From the blood work that was taken yesterday, and Sam’s vital signs today, Dr. Osborn determines the chemical cocktail Sam will receive later in the day. The main ingredient is a drug called Cisplatin.

For the Geeks: Cisplatin: An inorganic platinum agent (cis-diamminedichloroplatinum) with antineoplastic activity. Cisplatin forms highly reactive, charged, platinum complexes which bind to nucleophilic groups such as GC-rich sites in DNA, inducing intrastrand and interstrand DNA cross-links, as well as DNA-protein cross-links. These cross-links result in apoptosis and cell growth inhibition.

Cisplatin is approved to be used together with other drugs to treat squamous cell carcinoma - a cancer that begins in squamous cells, which are thin, flat cells that look like fish scales. Squamous cells are found in the tissue that forms the surface of the skin, the lining of the hollow organs of the body, and the passages of the respiratory and digestive tracts. Also called epidermoid carcinoma.

Dr. Osborn answered our questions about how and when to take all the different anti-nausea drugs and agreed with me that Sam has to work harder on his Nutren formula intake because he really needs the calories. Small victory for me personally, since I’ve been harping on Sam to eat more - I know he’s trying, but sometimes it takes a “white coat” to make an impression - well, the medical degree probably helps too.

Sam walks back, wheeling his IV drip, to Nurse Nanette and the pre-chemo meds are started. Shelly the dietitian stops by and raises her eyebrows when she learns that Sam is no where near the 4 cans/day of the Nutren formula that he should be taking. She suggests a night-feed drip, but we ask for a few more days to ramp up and she gives him a reprieve after he promises to work on that. Smart move on his part… she’s not kidding around.

After Sam finishes his lunch, another blood pressure reading is taken and Sam is finally approved to start the chemo at 1:00 pm. This process takes two hours intravenously. At 2:45 pm he receives an injection of Ethyol (a drug which is designed to protect kidney and certain other cells from radiation damage) and finally at 3:00 pm Sam is taken to Radiology.

We are finally home at 4:15 pm. A long day, but another milestone reached in Sam’s cancer battle. Two down, one to go Miss Killgalen. ("What's My Line,") Older people will get that one. Sorry, it's late and I’m thinking in clichés.

Maddy

Picnic Food is Magical!

Almost every year, my relatives on my father's side (Maglicco) put together a family reunion and Sam felt well enough today, August 9, 2008, to attend. Was it the thought of all the food that encouraged him to want to go? I could be wrong, but I'm gonna say yes. Food is magical!

Sam has been struggling to eat for the last several weeks because the chemo; medications and pain have kind of turned him off to eating. But today, he seemed to have an appetite. Hooray!!! He ate a meatball, a little chicken, some green beans and even a couple of cookies. That's in addition to two tube feedings totaling 1 can of formula. This is one of those two steps forward days. On Tuesday, when he gets his next chemo treatment, it will be a giant leap backwards - but we still have a few days to go and I'm really hoping Sam can continue to get some nourishment - like he did today.

Sam with Deanna & Eric

Sam with Maddy's parents

The visiting nurse was here today and Sam's pressure and temperature was normal. He gave us some good information on what to do to try to keep the digestive tract in motion. That's apparently important since the medications put your gut to sleep, so to speak.

I can say that God deserves a PRAISE today for the beautiful weather; the blessing of having my daughter and her very significant other , Eric, here; and for the opportunity to spending time with family. It's the basics that keep you grounded, but I'm lifted up today. Thanks God.

Maddy

Ups and Downs

Sam's feeding tube was placed on July 28th - 9 days ago - and it's been a trial and error experience for him. The plan was for him to take 4 cans/day (32 oz -a little over 8 oz/can) building up over several days. He is currently still only able to sustain 1 can/day generally in two feedings, but he is still able to eat a little food by mouth, so they are not too concerned. It's an adjustment and he's working on it. It's really kind of a strange site, but it's important and necessary for what's ahead.

Sam is just starting to experience a dry throat from the radiation and that will only get worse over time. He is just at the third week mark out of seven and has two more rounds of chemo. The next chemo is scheduled for August 12th. Sam's not looking forward to that; I can say that with certainty. "It's no fun.", he would say. He is getting thinner... but is holding his own.

We are looking forward to the weekend as our daughter Deanna and her boyfriend Eric will be visiting from Arizona.

Please pray that Sam can get adjusted to the feeding formula before his next chemo treatment. That will bring a whole new set of problems.

Battles

A friend suggested I read Psalm 18 and I read it to Sam last night (here’s a portion)

"I love you, Lord; you are my strength.
The Lord is my rock, my fortress, and my savior;
my God is my rock, in whom I find protection.
He is my shield, the power that saves me,
and my place of safety.
I called on the Lord, who is worthy of praise,
and he saved me from my enemies.
The ropes of death entangled me;
floods of destruction swept over me.
The grave wrapped its ropes around me;
death laid a trap in my path.
But in my distress I cried out to the Lord;
yes, I prayed to my God for help.
He heard me from his sanctuary;
my cry to him reached his ears."

I tend to think of the Sam’s cancer as an enemy. His body is under siege and he is in a battle for his life. This enemy wants to take over and while Sam may lose a few of the skirmishes (nausea and pain, etc.), I believe he will win the WAR. Sam believes God is his rock; hears his cries and will save him from this enemy.

The battles are different for me, it's challenging to stay balanced. Priorities. Expectations. Focus. I have to remind myself to focus on one day at a time and work on just sorting out what's really important (which is caring for Sam) and on keeping a positive mental outlook. The rest will take care of itself.

Nausea (Greek: Ναυτεία, "sea-sickness")

If only the nausea sam is feeling was from a cruise. At least the scenery would be more interesting. Like the picture here from our cruise in March. This is a picture of St. John Island where we got to go snorkeling.

The nausea from the Chemo treatment has finally begun to lessen, but Sam will now be receiving a shot before each radiation treatment that will help prevent cell damage to his kidneys and salivary glands, but the side effect is nausea. His next chemo treatment on August 12th will compound the nausea, and the radiation will cause his mouth to become increasingly sore and dry which will make it more difficult for him to take food by mouth. So, the feeding tube, while cumbersome, is a blessing because it will at least (hopefully) help to keep his weight steady and give him more energy. Eventually, he will also be able to take most medications through the tube.


Sam did feel better today, July 29th, and met with a dietitian to determine what type of food he will receive in the feed tube and to give him suggestions for diet and complications that will be ahead as the effects of the radiation develop. A visiting nurse will come by to help with the instructions for using and cleaning the feeding tube apparatus.


And yesterday, coincidentally (only God moment), one of our friends from North Park Church who is a physical therapist and has worked with patients with Sam’s condition, happened to be at the hospital at the same time we were there and was able to chat with me for a while and offered some need support.

The marvels of technology

On July 28th, a feeding tube was inserted into Sam’s stomach to help him be able to receive more nourishment than he has been able to receive by mouth. Despite spiking a fever for a few hours, he is doing well with the tube placement.

After he recovered from the tube proceedure, he was taken to the radiation department for his daily dose of gamma rays. The technicians and staff were really wonderful and allowed me to view the monitors and even take pictures of that area. It was fascinating stuff. Don't hesitate to ask questions, if you want to know more. UPMC Passavant has the newer technology called IMRT (short for Intensity Modulated Radiation Therapy). The intensity of the radiation in IMRT can be changed during treatment to spare more adjoining normal tissue than is spared during conventional radiation therapy. Because of this an increased dose of radiation can be delivered to the tumor using IMRT. Intensity modulated radiation therapy is a type of conformal radiation, which shapes radiation beams to closely approximate the shape of the tumor. Amazing!



I think the area they are targeting looks like a map of New Hampshire. I know, I'm really weird.

God is faithful - even in the little things.

Sam no longer drives due to a back injury that causes severe nerve pain in his right leg and because I work in town, we had a concern about transportation for Sam to and from his daily radiation treatments. Fortunately, UPMC Cancer Centers provide transportation to-from the hospital so that is really a blessing and we can certainly praise GOD for all his provisions, mercy and grace in our life.

But what makes the van transportation even more special for Sam is that the driver is a committed Christian and is someone that Sam has been able to develop a friendship with. They share a similar childhood background and can relate to each other. How cool is that.

As for prayer, Sam will need a lot of prayer to endure these treatments. He just started, and seeing him suffer at this point is hard, but to imagine that he will get worse before he gets better is sometimes hard to grasp. He needs courage, endurance, peace and the Holy Spirit to fill him to overflowing. I will need wisdom, patience, strength and a positive outlook to minister to him.

Maddy

Finally - Treatment begins

July 23rd at 8:00 am, Sam began his cancer treatments. After drawing blood and about a two hour wait, the results showed that his blood counts were adequate to receive chemotherapy. I had to leave for work, but Sam reported that he received radiation and then the chemo drugs. By the time I got home at 6:00 pm, he was feeling very nauseated and continued to feel sick from the drugs, even after taking additional anti-nausea medication. I only hoped he didn’t feel as bad as he looked.

This morning, July 24th, and tomorrow morning, he will go to the hospital for IV fluids and radiation treatment on each day. The nausea is intense, but they are trying to manage that with medications. Sam has lost 10 pounds since his first visit two weeks ago, but still had not lost too much to receive treatments. The weight loss is not so much from the nausea, but from the pain in his face and inner ear from chewing his food. The medications dampen it some, but not enough that he wants to endure the pain, so the appetite is gone.

The gastrostomy is scheduled for Monday morning, July28th. A feeding tube will be inserted in Sam’s stomach, so at least he will be getting proper nourishment, but will still be able to swallow food, if desired, for as long as possible before the radiation makes swallowing food painful. We pray that God will give him strength to endure.

The waiting is the hardest part.

Sunday – July 20th - It’s almost been one month since we learned that Sam has cancer. We are now waiting for a call to say that they have finished “mapping” Sam's radiation treatment. We were told on July 9th that this process could take 7 to 10 working days. We are hoping that we will learn something tomorrow. What we understand is that Sam will go in for a “dry run” and then the radiation treatment will start either the next day or a few days after. As I mentioned before, the waiting is always the hardest part – although, this is like the calm before the storm.

Sam is having difficulty eating – or I should say – chewing his food. He has quite a bit of pain in his face and ear and while the pain meds make him sleepy, they don’t completely manage his pain – hopefully they can increase the dose so that he doesn’t have to suffer as much. They tell us that he will be getting a feeding tube in his stomach within the next few weeks, but no news on that either. I think he’s lost a few more pounds so, when he does go in, that may speed things up regarding the feeding tube. But, again, he hasn’t been scheduled yet.

It’s funny how the anxiety builds with each passing day. As much as we realize that the treatments will suck, we just want to get started so that Sam will get better. We waited to break the news to our children and family because we wanted to spare them the waiting. I’ve read Gavin Sinclair’s book “All things work for good” and he encourages people to be their own advocate. It’s a fine line to walk though between being an advocate and being a nag. I just remind myself that God has everything under his control.

Treatment Plan

Once the mapping is completed, Sam will receive radiation treatments Monday through Friday for seven weeks. Additionally, he will receive 3 rounds of chemo therapy and he will be scheduled shortly for a feeding tube to be inserted because he will have difficulty swallowing or eating.


When I asked the radiologist about Sam’s prognosis he said that because of the lymph node involvement on both sides of his neck this is a very difficult treatment and said that Sam’s chances are 50/50. I prefer to think they are at least 51/49 since we have God on our team.


The next day, July 9th, we are back at the Cancer Center so Sam can be fitted with a “radiation mask” and he is taken for another CT scan – only this time with the mask on. The mask was made from a mold of Sam's face and neck using moldable plastic mesh and the technicians use a software program and the CT Scan they took of Sam wearing the mask. The mask (which he will wear for every radiation treatment) will prevent him from moving so they can be exact as to where to aim the radiation.

The Waiting Phase

Lord, give me patience. Note to self, be careful what you ask for.

It takes about 48 hours for an official diagnosis report after which the treating physician can order a PET CT scan to see if the cancer has spread to other areas of his body. Insurance company rules. Once the PET CT is completed the Cancer Center at UPMC will develop a treatment plan and we will meet with the radiologist and oncologist.

Six days have past since the biopsy and finally we have approval for the PET/CT Scan! The first opening for a scan is not until July 2nd at 4:00 pm – 2 more agonizing days of waiting.

The waiting continues – fast forward to July 8th and we meet with the medical team Dr. Chen (radiologist) and Dr. Osborn (oncologist) for the results of the PET/CT scan. The results show that the cancer is localized to Sam’s head and neck and at this point has not spread to other areas of his body. I’m relieved that the cancer hasn’t spread to his liver or lungs. Sam is now feeling the full weight of the news. It’s like drinking from a fire hose, as they say.

Dr. Osborn (the oncologist) told Sam straight away that this is the most difficult cancer to treat because of how sore the mouth gets. She told him he'll think "How bad can it be?" and she said, "It will be worse than you can imagine, but we will work to get you through it." She also told him that "No matter how bad it hurts, he must swallow every day, or he will lose the ability to swallow."

The radiologist told him that he will gradually lose his ability to taste food. I think that was one of the things that really impacted Sam. As it is now, the one thing he can and loves to do aside from cooking is eating. I'm sure that that will be the least of his problems as the treatment progresses, but I think it's probably a way for him to grieve and I know that he needs to do that.

History

February 2008, Sam began to have pain over his eyes – at first, he thought it was an allergy and went to his family doctor who treated him with Flonase for sinus pressure. The pain continued and his neck muscle on the left side of his face became enlarged and his ear and jaw began to hurt. In April, as the pain worsened, he remembered that back in February he popped himself in the jaw pulling a box off the shelf and thought maybe he was injured when the box came forward faster than he anticipated, and I convinced him to see my chiropractor who adjusted his jaw which was out of place. She suggested that if it didn't improve to see his dentist to rule out “TMJ.”

As the pain persisted and worsened, Sam went to his primary care doctor on June 14th. Concerned because of swollen lymph nodes, he sent him for a CT scan, which, by some miracle he was able to have done the same day – a Saturday – even though the scheduling department was closed. The report showed a tumor at the base of Sam’s tongue and enlarged lymph nodes. Sam was then referred to an Ear/Nose/Throat specialist – Dr. Scott E. Celin.

Sam and I have a prayer request. We got some unsettling news today, June 24, 2008.

Dr. Celin performed a biopsy of the lymph nodes on the left side of Sam’s neck and the diagnosis is squamous cell carcinoma – base of tongue (BOT) cancer.

Why Blog?

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 Sams 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 Paul's letter to the Romans chapter 5: 1-5 (1 Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, 2 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. 3 And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; 4 and perseverance, proven character; and proven character, hope; 5 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.

Maddy