Is Sam Glowing?

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

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

Lori, Dr. Chen's Nurse/Assistant

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

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

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

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

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

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

Remind me to breathe.

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

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

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

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

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

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

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

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

Joyfully yours,
Maddy

Download/Upload

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your comments are requested.

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

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

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

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

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

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

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

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

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

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

One of our first dates Feb. 1976

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

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

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

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

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

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

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

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

Imagine Chemo without Side effects

There is HOPE out there.

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

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

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

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

Steering clear of "what if" land.

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

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

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

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

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

Lift My Eyes Up - by Brian Doerksen

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

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

Psalm 121

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

Excerpt from the "Velveteen Rabit"

"Real isn't how you are made," said the Skin Horse.

"It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
"Does it happen all at once, like being wound up," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

For the complete short story, follow this link...

http://http//digital.library.upenn.edu/women/williams/rabbit/rabbit.html

Sick and Tired

Not much has changed from yesterday. Sam is still experiencing nausea; is very tired; sleeps for a while and then may have a mucus coughing jag which wakes him; pills, syringes, feeding tubes; routines; more mucus - oh, and how can I forget, the vomiting.

One more day of radiation; just one more day.

I assign no blame; but if I could spare one person from this hell my husband and I are going through called "base of tongue cancer" which typically strikes men over 40 who are smoker/drinkers (Sam was not) or who work around environmental risk factors - paint fumes/plastic byproducts/wood dust, (Sam Did) ----- I would tell them - PLEASE - If you smoke, QUIT. If you drink, do so in moderation. If you work around paint fumes, plastic byproducts and body fillers, wood dust, etc. - wear protective gear and/or get out of that line of work as soon as you can. If you find a lump that wasn't there before, see your doctor right away.

There, I said it. I feel better. You probably won't listen to me, but I put it out there in case there is one person who might. If you are that one person - save the people in your life the anguish of watching you suffer.

Last Radiation Treatment in sight.

Mondays are the days that the doctors make their rounds at UPMC Passavant Cancer Center and today Sam met with Dr. Chen, his Radiologist. Dr. Chen said that Wednesday will be Sam's final radiation treatment. Hooray! He said that Sam will feel awful for the next two weeks but should start to feel better after that... at least there is a turning point in sight.

Aside from weighing 132 pounds (a 32 pound weight loss since June 14th), Sam's vital signs (blood pressure142/72, heart rate 92, temperature 99.4) are pretty good and today his blood chemistry was okay. We will be keeping a watch on his temperature and blood work since those were the factors that put him in the hospital the last time.

Last night and this morning we and several thousand others in our area were without electricity because of high wind gusts from the remnants of Hurricane Ike. That meant no shower this morning as we have a well pump which runs on electricity. It's funny how having a morning shower can make the difference between feeling refreshed or grumpy. I can only imagine the suffering the people in Galveston and Houston TX must be experiencing. I will remember them in my prayers tonight and be grateful for little things like electricity, my own comfortable bed and all the other comforts of home. It's that perspective thing - keeping mine in tune is sometimes a work in progress.

Hurricane Cisplatin has come on shore.

Last Wednesday, the day after Sam received his Chemo, we were preparing ourselves for the "gathering storm" of the effects of Cisplatin on Sam. Well, the wave hit Sam at about 2:35 a.m. this morning and he has been under the weather, so to speak, all day today. One of the meds for nausea puts him to sleep and the other meds give him a vacant stare and then of course, there is the coughing up phlegm from the cells in his throat sloughing off. Sam describes the day as, "No Fun."

The weekends seem to be the hardest, but that's probably only because I actually see him longer. During the week, I am at work and he spends the morning at the Center, and then he comes home and rests so I see him for several hours at night and the cycle repeats.

Well, it is what it is. No amount of lamenting will change things. Hopefully, if the pattern remains the same, in a few days he will be over the worst of it. The nurse said this morning that they've seen many people go through this treatment and while she said it is the most difficult cancer treatment regimen they give, she also said they do have success stories. I will hold on to that thought.

Pray for Sam.

Maddy

Last Leg of This Marathon

When we last saw Dr. Osborn on Tuesday, Sept 9th, she joked about how pathetic your life is when your only excitement is that you had a bowel movement or that you hadn't vomited that day. That's how wonderful life is being treated for cancer. This is not really living, it's surviving. It's all consuming and it's tolerable only because it brings a hope of a future without cancer.

Yesterday morning at 9:00 a.m. and this morning at 8:00 a.m. Sam received a "Neupogen" shot at the Cancer Center to help prevent another hospitalization for low white blood cells. His vital signs are pretty good which the nurses tell us is most likely from getting a break from treatment; but truthfully, he looks like and feels like hell. He is exhausted, suffering from nausea and looks scary thin. He's operating on sheer will-power, strength from God and the prayers of faithful family and friends.

Yesterday I had a long conversation with a friend whose husband is also suffering with cancer and while it doesn't solve anything, it helps to talk with someone who really understands the ups and downs of this experience. It is very hard, as you can probably imagine, to see someone you love suffer. I don't have any special gifts or superhuman strength, but find myself setting aside my feelings about the situation in order to keep going and doing the everyday things that still need to be done. It's kind of like being a paramedic. When they arrive on scene, they get about the business of stabilizing the injured person and must set aside their own feelings about the horror of the trauma in order to do their job. It's almost like I'm in neutral - not looking back and asking why or how and not looking forward to the unknown - just trying to get through the day and support my trauma patient as best I can.

Sam will see the radiologist tomorrow and will most likely finish treatment this week with five more radiation treatments - unless Dr. Chen decides differently which we have been told is a possibility. Five more days seems like a lifetime when you are as sick as Sam, but it's something to look forward to and then his recovery can begin in earnest.

Next steps will be a PET/CT scan at the end of October and the results appointment with Dr. Osborn on Oct. 28th. Please pray that they got all the cancer and that Sam will not have to endure more chemotherapy. Pray that he has the strength to make it through this week. Pray that God would lift our spirits and give us the faith and strength we need to continue.

We miss you all.
Love, Maddy (and Sam)

Holding his own.

Just got home from work... Sam is very tired as he didn't get into bed last night until 3:30 a.m. again because he was still trying to consume his food. He has to be in the recliner to use the pump because it keeps him at the proper angle so as not to aspirate on the formula if he were to fall asleep. The van picked him up this morning at 8:00 a.m. to take him for hydration and radiation so it was hard going in the morning, but he managed.

Once he returned home he was too nauseated to get on the pump, so he took a nap and didn't get started on the feeding pump until 2:30 p.m.; so it's going to be another late night for him. He is scheduled for a Nupogen shot at 9:00 a.m. tomorrow at the Cancer Center so I hope we will be able to get him back on a reasonable schedule. Sam's throat is still raw and sore and his voice is still weak, but he's not as hoarse as he was a week ago.

When you talk with God and think of Sam, pray that the nausea stays in check. It is present, but the meds are controlling it for now. There's an answer to prayer. Nausea is the most unpleasant side effect and he's already wiped out already. It would be a huge blessing if this last chemo is not as difficult as the previous two.

Me? I'm okay, just tired but happy that the weekend is here and it's raining. I love the rain - it has a calming effect on me and, when it rains - I don't have to water plants. Best of both worlds.

Love to all.
Maddy

A gathering storm

It was hard for Sam to wake this morning. We got back late from the Center yesterday and because he didn't get to pump his formula until about 4:00 pm, it was 11:30 pm before he completed 3 cans for the day (1125 calories.) Between the pain meds, nausea meds and waking up to cough up mucus, it was hard for him rise at 7:45 am for me to drive him to the Center by 8:30 for hydration and radiation. But, he made it. He's a trouper!

All things considered, he's doing okay today. Nausea is beginning to develop, but for now it's under control and aside from a hugely sore throat, he is not complaining.

If I were to describe our mood today, I would say we are bracing for a gathering storm. I'm picturing people in Texas who are aware that hurricane "Ike" is headed their way. They know it will be difficult but while they hope that the storm turns away they prepare themselves to survive its impact.

Sam and I became acquainted with fellow North Park Church members Bill and Thelma. Bill has been diagnosed with cancer and had a recent chemo therapy that put him in the hospital. He's recovering at home now and I called to see how they were doing yesterday. Thelma answered and as we talked, our conversation turned to prayer and she gave me a wonderful analogy that I will share about the benefit of prayer.

Thelma said, prayer is like the oars of a canoe when you are out on a lake. The oars don't bring the shore closer to you; they bring you closer to the shore. And prayer, like the oars, doesn't bring God closer to you, it brings you closer to God. I thought that was a beautiful word picture.

I don't know when the full force of the storm will hit or how difficult it will be for Sam this weekend, what I do know is that prayer has a calming effect on Sam and it helps him to keep fighting/striving and that can't be bad.

It's been a long day.

We were at the Cancer Center from 8:00 am until about 3:30 pm. Sam was hydrated; we met with Dr. Osborn the Oncologist; he was given pre-chemo drugs for nausea; and then the chemo "Cisplatin" and radiation.

Sam & Nurse Linda. She administered his meds today.

Sam will go to the center and receive hydration on Wednesday, Thursday and Friday. Dr. Osborn, pictured below, ordered for him to recieve two shots of Nupogen; one on Saturday at 8:00 am and one on Sunday at 8:00 am, in the hope of keep him from developing Neutropenia and ending up as an in-patient again.

Sam is pictured above on the IMRT radiation unit's monitor.

We are both tired. Sam is feeling okay today, but in a few days he will begin to feel the full effects of the Cisplatin and the nausea will become intense. This process takes a lot out of a person.

At this point, we are too tired from managing the meds and feedings to be emotional about the situation. That will come after he's finished with the treatments and as we wait for the PET/CT Scan sometime the week of Oct 13th or 20th. But the good news is, he is almost finished this course of treatment - only 8 more radiation treatments to go!

Breaking News - Treatment update

Sam had a radiation treatment today and was cleared by his Radiologist to receive his third and final chemotherapy tomorrow, September 9th, barring any problem with his bloodwork. The next three - four weeks will be hell for Sam, but we have a frame of reference from the past two treatments and we know the danger signs.

His condition is stable but he has dropped a few more pounds - he's now 136 pounds. He has adjusted well to the new formula but had nausea and bloating this morning when he used the bolus method (injecting formula at a faster rate through a syringe) to consume 4 ounces of formula versus taking it more slowly through the pump feed. I have confidence that it's not the formula, and in a few more weeks he will be able to build himself back up to a healthy weight.

Dr. Osborn told us on Friday that it will take a while for his taste buds to regenerate (probably a month after radiation treatments end) and taste sensations will return at different rates. That will be an interesting experiment.

Sam is still having trouble with his voice, so he's not taking any calls, and is too weak and tired for visits, but he sends his love to everyone and asks for your continued prayers for strength.

Believing God will see him through,
Maddy

A Cancer Called Bitterness

On Friday morning Sam had a visitor at the hospital who asked the question, “Do you feel any bitterness with all that has happen to you?” Sam didn’t need to think very long about his answer. He immediately said, “No – there are many people who are worse off than I.”

The fact of the matter is that Sam dealt with bitterness ten years ago after he was injured at work. While repositioning a sheet of brass, he ruptured his L5/S1 disk in his back and underwent a Laminectomy/Disectomy on September 11, 1998. After six weeks on bed rest and then work readiness physical therapy he returned to work. Not long after returning to work, Sam’s leg pain returned. Scar tissue developed inside his spinal column that causes a debilitating burning nerve pain that starts in his right hip, and travels down through his leg and into his toes. On a scale of 1 to 10 his pain is always in the 2-3 range and with activity or just from standing or sitting in a chair it increases to a 10 and remains high until he reclines for hours and sometimes days. And if the burning pain wasn’t enough, intermittently and without warning, he will feel a sharp stabbing pain in his calf which he describes like being stabbed with an ice pick.

Sam was a guy whose identity was tied to doing. He fixed our cars, built an addition onto our house; fixed things around the house, etc. At work he painted signs that are in offices, cruise ships, hospitals, Disney World and even Mall of America. He is very talented and before his injury he was constantly in motion.

After years of being on and/or trying different pain medications; going through more physical therapies and even having a “spinal cord stimulator” unit implanted, he still got no relief from his leg pain. Finally his doctor took him off work and that’s when he faced a “cancer called bitterness.”

The way he handled this life challenge gave me more respect for him than anything he had ever done in his life. He was at a cross road back then; a choice between being bitter or better and he chose the better road. You see, he realized he is not a human doing, but a human being and that bitterness will eat at you like a cancer. He turned his life over to God and sought to do His will. It was nothing dramatic he says, just a realization that Jesus loves him, wants to be his friend and has a plan for his life. Peace and acceptance followed.

This cancer was most likely caused by the exposure to all the paint fumes; plastic by-products and wood dust he was exposed to at his job. His back injury was sustained at work. Sam knows he can’t change the past – but with God’s help, he is determined to live differently in the future and without bitterness.

What an incredible guy I'm married to.

Maddy

Lesson Learned

It's 8:30 pm; we are finally home and settled in - more or less. What a long 5 days! Sam was relieved to finally have the IV removed and now he is in his favorite recliner, finishing his last 200 ml of formula. His temperature is 98.9 - and I will continue to monitor him.

The first day of Sam's "Passavant Hospital Holiday Retreat", started off with a battle over formula, but what started off as a negative actually resulted in a positive (as usually happens with enough time). The formula that the dietitian recommended is called Nestles Crucial Complete Elemental Nutrition for Immune Support - Crucial, for short.

As it turns out, this formula is for the dietary management of: Trauma, Burns, Hypermetabolism, Fat Malabsorption, Pre- and Post-Surgery, Wound Management, Malnutrition, and Malabsorption. Sam has radiation burns to his neck, inside and out, is hypermetabolic and is malnourished... so the dietitian recommended some good stuff.

Some highlights of the benefits of this product:
High-calorie, high-protein elemental diet for immune support and wound healing;
25% of calories from protein supports elevated nitrogen requirements for healing;
Peptide-based for improved tolerance and absorption;
1000 mL provides 15 g of arginine;
Lipid blend of marine oil, MCT and soy oil with a desirable n6:n3 ratio of 1.5:1;
50% of fat source as MCT facilitates absorption;
Elevated levels of Beta-Carotene, Vitamin A, Vitamin C and Zinc;
Moderate osmolality (490 mOsm/kg H2O) improves tolerance;
Meets or exceeds 100% of the RDI for 23 key vitamins and minerals in 1000 mL (1500 kcal);
Lactose-free, gluten-free, low-cholesterol;

I was shocked that when I asked his oncologist about the new formula, she said she new nothing about that stuff; and that the dietitian recommended it. I thought; how can this be? But apparently oncologists are "too specialized" to know about dietetics. I mean CRIPES, doesn't she care what her patients are ingesting - even out of curiosity; hasn't she ever heard of Google? Pardon my sarcasm. I asked her because I was trying to determine how many calories Sam was taking in. So the only thing to do was to Google it. When I realized Crucial's benefits, I called to make sure it was covered by insurance; brought my findings to the hospital; showed the information to her and asked her to write the order for Sam to continue with this product.

Result - she did.
Lesson Learned: Be your own advocate. Do your homework. Know what you want and ask. Most times you will succeed.

Sam and I are exhausted and we plan to get some need rest this weekend. It is so wonderful to have Sam home. That's surely one of today's blessings!

Sam is getting "sprung" from Passavant Today!

When I got to the hospital this morning at 7:30 a.m., my favorite patient was grumpy and very discouraged. When they took his temperature at 5:00 a.m., it was 100.2 and they gave him Tylenol. He was sure they were not going to let him go home and he was bummed out.

I told him he had 45 minutes to enjoy his "pity party" and then it was over. My poor sweetie was having trouble sleeping and with the drugs and general hospital routines, he is exhausted. He really wanted to come home.

Finally, the oncologist came in and said that his blood work was good and she would let him go home today since she would be seeing him Monday. You should have seen his face. He lit up like a Christmas Tree with 5000 lights! It was so cute.

On Monday, if Dr. Chen the radiologist starts the radiation treatments again, he will receive his final chemo on Tuesday. While we are not looking forward to a dose of Cisplatin "poisoning," it means that the conclusion of this therapy is near and that ain't all bad.

So, I will be picking him up this afternoon with much gladness!

Looking ahead

I visited with Sam this morning from 7:30 am until about 9:30 am and then again after work for a few hours. He is continuing to improve and without any Tylenol, his temperature has been hovering around 99.9. If he continues to hold this temperature he may be released either tomorrow or Saturday. His blood count was in the normal ranges and when we talked with Oncologist, Dr. Osborn, she said that there was no indication of infection. Sam even finished 1000 ml of formula today for 1500 calories, which is the most calories he has consumed in a month.

That is the good news, but as Dr. Osborn told him today, it will get much worse starting next week. He is scheduled to receive his final chemo of this course of therapy on Tuesday, Sept. 9th and on Monday he will most likely start the final 9 or 11 radiation treatments. Dr. Osborn said imagine having a bad sunburn and going out in the sun an being burned again. Add to that taking a dose of poison that will make you so sick you don't know how you will go on.

As Sam and I took a short walk tonight, we talked about bench marks.

We sat for a few minutes, holding hands and as we talked we realized that Sam will most likely be finished with his radiation and chemo treatments by Sept. 22, just in time to celebrate our 32nd wedding anniversary on Sept. 25th. And by Christmas we pray that he will have a clean PET/CT scan that will declare him free of cancer. What a Christmas gift that will be. Maybe he will even be able to enjoy our traditional Christmas Eve Dinner of Beef Wellington.

It's funny how cancer makes you appreciate the little joys of life (tastebuds that work) and how it forces you to get the meaning of life into perspective. Sam and I both have a peace about his cancer fight, no matter the outcome, because we know who holds the future.

Wrestling with a 600 lb Gorilla

Where do I begin? Tuesday, Sept. 2 at 1:35 am, Sam was finally taken to his room in Passavant Hospital. Because he had a low white blood cell count, low neutrophil count and a temperature of 103.3, the risk of infection was great enough for him to be admitted. Diagnosis: Neutropenia. What is that, I wondered – you may be wondering that, too?

Here’s what I found:
White Blood Cells (WBCs) include several different types. Each has their own role in protecting the body from germs. The three major types are neutrophils, monocytes and lymphocytes. Neutrophils (also known as granulocytes or polys) kill most bacteria. Monocytes kill germs such as tuberculosis. Lymphocytes are responsible for killing viruses and for overall management of the immune system. When lymphocytes see foreign material, they increase the body’s resistance to infection. WBCs play a major role in fighting infection. So infections are more likely to occur when there are too few normal WBCs in the body.

Neutrophils are a type of white cell found in the blood. Their main job is to fight infection especially infections caused by bacteria and fungi. So if your neutrophil count is low this means you are more at risk from infections. A low neutrophil count is called neutropenia.

Apparently Neutropenia is common after chemo and radiation. Chemo kills cells and with the punch of a 600 pound gorilla, it flattened Sam. But, Sam is a fighter and he has battled back. As usual, things don't go smoothly in hospitals. It took several requests to get formula for his feeding tube. They kept sending up trays of liquid food. We kept refusing the trays explaining that he is not taking food by mouth and finally at 5:00pm he got formula. Then they couldn't get the pump to work. Finally, one of the nurses suggested we use gravity to let the food drip. Poor Sam thought he was going there to be taken care of; instead he had to lobby for food, while enduring a fever and being on serious pain meds.

I was worried about him on Tuesday, but today he looked better and they have been giving him a drug called Nupegen to help his neutrophil counts return to baseline. This usually takes about 4 days. The nurse called the side effects of chemotherapy causing nadir which refers to low point of blood counts due to the destruction of cells, good and bad. She also said that what happend with Sam happens often from radiation and chemo. For more info, follow this link:

http://www.chemocare.com/whatis/what_is_nadir.asp

In addition to the neutropenia, Sam is still very tired and weak, has a very sore throat and has some laryngitis. He will be in the hospital for several more days until his counts are high enough and his temperature normalizes.

There are some "only God" moments to share: The ER doctor treating Sam told us his father had just recovered from a very similar treatment for cancer of the larynx. He was very thorough and compassionate toward Sam. Also, Sam thought he saw blood in his urine on Monday night and that pushed our decision to take him to the hospital. At the hospital, the tests showed no blood in his urine. Coincidence? Not in my mind.

We appreciate your continued prayers for our battle. Pray that we can have renewed strength to go another round with the 600 pound gorilla called radiation and chemotherapy for squamous cell carcinoma.

Sorry I haven't posted sooner... I've been swamped. I'll post again tomorrow.

Love,

Maddy

Admitted to the Hospital

Sam was admitted to UPMC Passavant Hospital last night. Yesterday, and most of the weekend, he had been running a high temperature and we were treating it with Advil and Tylenol, but late yesterday his temp went to 104.1 and he thought he saw blood in his urine. After numerous tests (bloodwork, urine analysis, chest x-ray) they admitted him because his WBC (white blood cell) count and Neutrophils were low.

He will be in a private room due to concerns regarding infection and when I learn more today, I will update this post.

Sorry I don't know more now. I wasn't able to get though to the nurses station at this writing. To be honest, I am glad they admitted him. We both had been concerned by how long his temp had been staying high (since August 21st) and I'm hoping they can stablize him and get him feeling better. I don't know if the Cancer Center will continue his treatments today, but I'll let you know later.

Pray for us.

Maddy