Cure Kevin

Melanee and I met with my Oncologist today and talked about what’s next for chemo, since the clinical trial I was on didn’t seem to be working. The next round is a mixture of a couple of drugs: Gemcitabine (or Gemzar), which seems to be the standard of Pancreatic Cancer treatment, and Oxaliplatin; the combination is usually referred to as “GemOx”. The goal this time is to reduce the size of my tumor, and this mixture has been known to accomplish just that. From what we’ve read on the ‘net, this is considered an “aggressive treatment”, and our doctor says that, although this isn’t a normal mixture he orders, because I’m so young and healthy, I should be able to handle the combination.

Of course, along with the new drugs comes a new chemo schedule and new side effects. I’ll be getting my treatment twice a week, every other week; the first day I get the Gemzar and the second day I get the Oxaliplatin, then I get a week off, and we do it all over again. The list of side effects also makes we wonder if this is more a cure or a torture regime left over from the Middle Ages!

The most curious side effect is “sensitivity to cold”; I’m already a LOT more sensitive to the outside temperature than I was before (I was the one that used to love it cold, now even on a “nice” summer day, I’m wearing a sweat shirt!). The doctor said that it may be even worse than that, though, because it may cause a “neurologic pain”, like a sore tooth or something. He suggested that all the food and liquids I eat should be at room temp. Can’t wait to see how I’m gonna eat Ice Cream at “room temp”!

In any event, the war isn’t over and the battles continue on. We find out sometime mid-October how this chemo mixture will work. And trust me, when you’re measuring your life in CAT Scans, October seems like it’s a million years away!

Well, after a very long day at the Cancer Center (and drinking the very nasty Contrast Drink… made me sick all night), we finally got a call from our Oncologist with the results of the scan. The scan showed that the tumor on my pancreas was unchanged in size, but there was another spot on my liver. So, not only did this flavor of chemo not work, things have gotten a bit worse.

We meet with the doctor on Thurs. to discuss the next steps, but it will probably involve a new mix of chemo drugs… along with new side effects and problems. Gee.. I can hardly wait!

Obviously, this isn’t great news, but we’ll get through it. Last night was a night of mixed emotions and a fair amount of battling my emotional demons, but I’m sure everything will work out OK. We just have to find the right mix of drugs that will kill my particular flavor of cancer. I just wish the news was a bit better.

Today, I’m scheduled for my first CAT Scan since I’ve started my chemo treatments. This scan will tell us if the current chemo treatment is working or not, and how effective it is. I have to tell you, though, this simple test is causing me more anxiety than I have felt in a long time. Even though the scan is today, we won’t know the results until Thursday… the wait is gonna drive us crazy! What if the the chemo isn’t working? What if it is? How will things change either way? The questions running through my mind are endless (and yes, some of them are from the Dark and Ugly parts of my mind).

My Mom is a person of endless faith and she believes, no… she knows that these treatments are going to make me better. I wish I could have her level of faith all the time, but when I’m looking at a CAT Scan on the horizon (and the prospect of drinking that wonderful contrast drink!), the questions bouncing around in my head shake my faith a bit. The Dark and Ugly part of my mind wants to take over my thoughts when I get anxious like this, so keeping my head straight is a bit more work. I try to keep myself busier than normal and not thinking about it too much.

I’ll be glad when this Thursday has come and gone; by then we’ll know the results of the scan and will know for sure what happens with my chemo treatments (and the rest of my life!). We just keep living our life from one CAT Scan to the next, but I’m glad that I don’t have to go through this level of anxiety until its time for my next CAT Scan.

About a week-and-a-half ago, I started noticing some discomfort when I sat down. It felt strangely like a problem I had about 3 years ago and I thought I could ride it out (here’s the part where I try to play Doctor… not a good thing). Last Wed., when I went for my blood work, I talked to the doctors and nurses about the problem, and their concern was getting it cleared up before my chemo treatment next Thurs. They prescribed some heavy-duty antibiotics hoping that would kill things off and gave me instructions that if it didn’t get better to call them.

Well, Sat. morning things weren’t any better so I made the call and was told, “Head to the emergency room and have it re-evaluated”. Off we went for our waiting marathon at the Emergency room and when we finally got to see the doctor (which turned out to be Marlene’s boyfriend’s dad!), they told us it was a “Perirectal Absess” and it would have to be lanced, drained, and cleaned up. Yeah… just the news I was looking for (please don’t miss the note of sarcasm here; I was not overjoyed).

Yale Hospital was a busy place on Saturday and I didn’t get into the operating room until about 9:00 PM and, since it was so late, was admitted and stayed the night. The surgery was very minor and went off as planned. The doctor said the absess was about 3 inches across (which is pretty big), but should clear up just fine, and it IS a lot more comfortable to sit down. Obviously, I’m working from home this week and we’ll have Visiting Nurses come by for a while to take care of the dressing.

Our Anniversary plans in New York will have to be put on hold for a couple of weeks, but we’ll get that celebration in. My biggest hope is that things will all be cleared up for my chemo on Thurs. This week is the BIG week when my CAT Scan will tell us if the drugs are working or not and I don’t want anything to get in the way of THAT news!

Next week Melanee and I will celebrate our 26th wedding anniversary. It’s hard to believe that we’ve been together for that long, but it also seems like just yesterday that we knelt across the alter and made our vows for eternity. We’re both very much in love with each other and I don’t know that I could make it through this cancer without her.

Melanee wanted to surprise me with a trip to New York City on Monday, eat at the same restaurant we ate at when we were on our honeymoon, and sight-see a bit. She was really good about keeping the secret from me, but she mentioned her plans to one of her co-workers and that started a bit of a breakdown in her plans. Now, don’t get me wrong… her co-worker didn’t go around blabbing about Mel’s plans, but started to scheme on her own.

It turns out that at Mel’s office, you can wear blue jeans on Friday if you donate a couple of dollars to a local charity. With everyone’s permission, Mel’s co-worker turned Melanee and I into that “Local Charity” for a week and last week presented Melanee with a car and driver and a enough cash for us have a very nice dinner in New York City. All I could say was “Wow!”. Mel and I have always spent so much time on the giving end of things that we’re not used to being on the receiving end of such generosity. Needless to say, we were both beyond words, and pretty teary-eyed for quite a while.

We also now have a much better understanding of how big an impact such acts of generosity can have on people’s lives. We’ve all had an instance where someone was running a collection for someone at work. I now have a much better idea of what that collection means to the recipient; it is truly a faith building experience; faith in your fellow man, faith in the love of others, and faith that there is always hope. To Melanee’s co-workers: Thank You! You have no idea how this simple expression of generosity has affected Melanee and I. Your kindness will not be forgotten.

You have probably noticed that we haven’t posted a new entry in a couple days. Don’t worry we are all fine; we are just having internet connection problems. We should have things resolved at the end of the week. We will post more information when we get connected.

My husband and I enjoy working together in different aspects of life. We enjoy serving in our church in various capacities. Through the years we have been worked closely with the teenagers in our church. When he was released as Bishop, he hinted to our children’s (Primary) president that he would enjoy working with the children in our church. Lo and behold, he was called as chorister and I was called as pianist. Now understand, Kevin has never played an instrument or learned how to read music. He has learned music through osmosis from our daughters and I. Leah played flute for a while, Ashley plays cello, Mallory plays viola, and Marlene taught herself piano. Most of us sang in our church choir. Marlene is part of her high school vocal jazz group. So we had music in the home for many years.

So, here he is standing in front of a group of three to eleven year olds teaching them songs. It was bravery personified. (If you think his chemo sessions are hard? You should try to keep these wiggly youngsters entertained for 30 minutes after a long day of Sunday meetings). He encouraged them to sing loud so the others in the church building could hear them. The leaders said that was the best singing the children have done in a while. We also survived the three year olds’ restlessness and one quick comment about his bald head. A child is accepting and loving in whatever situation they experience.

I enjoyed watching him work with the children on Sunday as he channeled their energy and kept their attention. He just has the magic touch. We both finished the day with big smiles. Just another way we can give, yet receive more in return. (And I can watch my husband influence others in another positive way.)

As I talk to family and friends, one thing that seems to prevail in most conversations is the need to do something; anything that can help us, can make life easier, or fight my cancer better. Many people have met this need by providing us meals, helping with yard work, or even sending along interesting information they may find that could help fight my cancer.

This feeling of frustration must be pretty common among a lot of people because in my friend John’s church, they’ve implemented a “prayer beeper” program; the church provides a beeper for a couple of weeks where you can call that number and the person with the beeper will know you’re thinking of them. John was kind enough to get me one of these beepers for a couple of weeks, so if you feel the need to “do something”, give it a call (203-657-0081). John says that most people in his church just enter the number “777″ as the call back number; just so you know you’re being thought about.

Seems like a nice idea and perhaps another way for people to feel like they’re helping and able to do something to help us get through this challenge in our life. Thanks for thinking of me John.

Friday was a bit of a weird day for me… it was another day full of naps and I’m not sure why. We went Kayaking Thurs. night (and had a great time… Thanks guys!) and by Fri. morning, even after a great night’s sleep, I was still feeling really groggy. After finding me slumped asleep at the keyboard, Melanee seemed to think I might be running a fever and, sure enough, our trusty thermometer validated her tried and true Mother’s Instincts.

This low-grade fever started me thinking about my naps, too. I’m wondering if my body is starting to have a hard time multitasking (at least from an infection standpoint). It almost seems that whenever I get any kind of infection, no matter how small, my body needs more and more sleep time to fight it off. I guess my white blood cells, those White Knights of Infection Killers are starting to get a bit tired and need more time between battles to stay on top of things. Maybe I need to bring in reinforcements with drugs, but I’d like to avoid that if I can.

Now, on the other hand, I really like my naps and maybe my brain is just telling me this is a nice place to go and forget about life for a while! That soft, drifting feeling as I fade off into my dreamland is a very comforting feeling. The idea that I don’t have to think about drugs, treatments, or doctors for a couple of hours has a lot of appeal to me. I wake refreshed and able to go on, so I’m sure there’s at least some extra mental benefit from the naps!

Either way, it does seem that infections are taking more out of me to fight off. If taking a couple of nice, cozy, comfortable naps is the way to let my White Knight blood cells fight their battles, hey, I’m all for it!

As tired and worn out I was last week from my Chemo treatment, I’ve seemed to have bounced back pretty well in the past couple of days. I’m not sure if its because I’m fairly young, or if that’s the cycle I’ll expect from my treatments, but by Monday, I was feeling OK, and by Tues. was good enough to be back at work.

It really is strange (at least to me) how quickly I can turn from a sleep-craving zombie to a normal human being. Maybe this is one of the things that my doctor was referring to when he mentioned that my “youth” might very well be an asset to my treatments. I think for my next chemo treatment, I’m going to try to document the days following the treatments a bit closer so that I can better predict how soon I’ll be back on my feet. Right now, it seems to take about five days to get “whole” again.

We’ll see this afternoon just how recovered I am; Scott (my kayaking buddy) and I are headed back out on the river after work. Last time we did this section, I was a bit tired from sitting in the kayak for a couple of hours (note to self: take a couple more breaks this time!), but other than that, no worse for the wear. Now, with chemo so close behind, we’ll see how I survive this trip.