Cure Kevin

Well, we met with the Doctor yesterday and laid out our plans for the next round of chemo. I think my tumor has the doc a bit frustrated because he’s given me stronger chemicals and larger doses than normal and still there’s no change. It frustrates me, too, because I can tell that right now, he seems to be running out of options and that worries me if this round doesn’t work.

Our new “flavor of the month” is another dual-mix of CPT-11 and 5-FU. The 5-FU has to be infused over a 48 hour period, so I’ll be wearing an external pump for a couple of days while the drug gets pumped in. I’m not looking forward to having a piece of hardware hanging off my belt, but I guess that’s the price I’ll have to pay to get the tumor under control.

We’ve also started talking to a company out in Arizona call T-Gen that does molecular profiling to help dial in the right chemo program. From our initial talks with them (and they are very initial talks), I’m not sure it’s the silver bullet we’re hoping it will be, but we’re exploring as many paths as we can. We’ll keep you posted.

Thursday was a tough day for us. We are gradually feeling better because of all your thoughts, prayers, and acts of kindness. We would not know what to do without all of you. The love you have sent our way has literally kept us going.

I have told Kevin that God must need him for some special reason. That’s cause he is really great guy. I have lots of faith that we can get through this successfully. I have put our burden in the Lord’s hands and I am going to use all the medical know how that God put on this earth to fight the cancer. I just need to pull back on the rope and fight with all my might to keep him here.

Calls have been made to different places. Plans are in the works. I don’t want to give details till plans are set. But we are not sitting back and accepting what is happening.

We ask that prayers will concentrate on doors opening for us to get the correct treatment we need and the Lord’s guidance will be given on the path we need to take. –Melanee

Well, I got the long awaited phone call from our Oncologist and the news was not good. The tumor has continued to grow and we’re now talking about a third chemo mix (we’ll get into the details more when we meet with the doctor on Monday). I don’t have much more in the way of details, but we’ll have more on Monday and I’ll post the details then.

Sorry to disappoint you… I know everyone (including us) was so looking forward to different results.

Well, I had my CAT Scan last Tuesday (and they STILL haven’t changed the nasty Contrast Drink!). We have yet to hear any results… at all. We left a message with the doctor yesterday, but still nothing yet.

I’ll just have to wait for someone to call… so I’ll be here… waiting…wondering… hoping the phone will ring……..

I mentioned a while back that I’ve started to really enjoy the comments that people are posting on the blog. One of the things that you can’t see are the “snail mail” comments that I get; the piles of cards and letters that people keep sending me.

It seems that a week doesn’t go by that we don’t get a handful of card and letters. True, the flow has slowed down a bit since I first got sick, but we still get several every week. I look forward to them as much as I do the electronic comments that I get on the blog, and as grateful for everyone that takes the time to send me a “snail mail” comment!

My brother and two sister’s families came over Saturday to help my husband decorate our house for Halloween Saturday. Of the three families there were a total of twelve children there (that doesn’t include Marlene). We were able to get the display up very quickly with all the hands to help. Fences were put up, gravestones were set in place, and spider webbing was stretched on the fencing. Halloween lights were set up on the front porch. My parents brought pizza and my siblings brought sweets. The kids were a big help. Kev stayed outside for a 15 minutes trying to guide and help. The wind and the coolness fall day made him very cold and it being a chemo weekend he got tired fast.

For several years now Kev has decorated the house for Halloween. We would have one- story high spider webs hanging off our front porch with one foot spiders hanging off them. He has a grave yard that has been displayed for a few years with styrofoam head stones. Each year he thinks of a new display he can do so each year the decorations get more elaborate. Last year’s project was a head suddenly coming up from behind a grave- stone. He has rigged flying ghosts other years. He loves trying to scare the trick or treaters and the trick or treaters love to come to our house to get scared.

I would always tell him that he has to do as big a display for Christmas so neighbors don’t think that we only like Halloween. I just think Kev enjoys having fun and interacting with kids any way he can. I know this was tough for Kevin not being able to set up for his favorite holiday, but he enjoyed having the nieces and nephews over to help him. And having some of the family together to brighten our day.

We are looking forward to scaring and having fun with the trick or treaters this year. Happy Halloween. –Melanee

This is probably the most asked question I get, and it’s probably just as much a greeting as a real question, and my usual answer is “I’m doing good”. There’s always more behind the actual question, and there’s more to the answer as well, so since it’s been a while since I’ve answered “how am I doing” here on the blog, let me take a minute and fill everyone in.

I’m just starting the fourth week of my Gem-Ox chemo. Round three (two weeks ago) really sucked the life out of me for about 4 or 5 days after my treatment. I was really tired and didn’t do much. I went to Tai Chi the Thurs after chemo, but had a hard time getting all the way through it; it was tough to stand there for an hour-and-a-half when your body is nearly drained of energy!!

After about 5 days or so, I started to pick up my energy. Last Sunday, I was actually feeling really well and was able to do the first practice for our church’s children’s program all the way through. We had people over Monday and Tues nights and I still felt really good; my energy level was really good. I was able to get quite a bit of work done as well and my afternoon naps were getting shorter and shorter.

My theory is that while the chemo treatments are hitting me harder and harder, I’m rebounding faster and better… at least that’s the theory! We’ll test that over the next couple of weeks. My first round of this chemo treatment yesterday really wiped me out pretty good. I was very tired and nausea was in full force (it may have been related to what I had for lunch, though… I’m not sure yet). I get round two today and we’ll see how that works out. We’ve got all the nieces and nephews coming over tomorrow afternoon to decorate the house for Halloween (oh yeah… for those that don’t know, I go pretty much all out for Halloween and the other kids are starting to get old enough to enjoy the fun!). I’m hoping that I’ll be able to get enough of a nap in tomorrow to get through the decorating!

Over all, I’m doing really good. When the doctors and nurses see me, they say I look good; my color is good and I look like I’m doing well. We should have our CAT Scan scheduled for next week sometime, so we’ll know for sure exactly how I’m doing by then. In the mean time, thanks for all your thoughts and prayers; they really do make a HUGE difference in our life. And know that you, too are in our prayers.

I got an Email last week from my friend Beth who was telling me about someone she knows that is “Living with cancer”. That term really got me thinking about the difference between “Living with cancer” and “dying from cancer” and which am I doing: living with, or dying from cancer.

I have one of those very nasty, fast moving kinds of cancer that when you tell people (even doctors) that “I have pancreatic cancer”, the reaction is usually “Oh”… and you can see in their eyes them making the connection between cancer and death. I remember when I first told people that I had pancreatic cancer, and saw that reaction, I’d just quote the line from Monty Python and the Holy Grail: “I’m NOT dead yet!” (add your cheesy British accent here!).

I also had to decide pretty early on how I was going to approach my cancer; was I going to accept that it was a terminal illness and that, if the statistics were right, within a year I’d be dead, or was I going to fight this to my last breath. I think you can tell that I chose the latter and have decided that I’d rather fight than surrender. The statistics may still win out (and there are times when the dark parts of my mind want me to think they are), but not without the fight from me.

But as I mentioned, pancreatic cancer is one of the nastier ones and doesn’t go away all that easily. Of all the long-term survivors I’ve talked to, they’ve all adapted the attitude of not curing their cancer, but managing it. That means that the cancer may never go away; that chemo will be a part of your life (in one form or another) the rest of your life, and hospitals and CAT Scans will be a regular part of your life forever. They’re living with their cancer.

After some very deep soul searching, I’ve come to the conclusion that, despite all the nausea, the fatigue, the neuropathy, and the host of surgeries and procedures I have to go through, “managing” cancer is a lot better than dying from it. So, as Beth so aptly put it, think of me as Living with Cancer, but never Dying from it.

Monday night, Melanee and I went to a wedding reception for the youngest daughter of our great friends Jeff and Cheryl. When we first got the invitation, we were both a bit worried about the travel distance and the fact that this would be on a Chemo Weekend. We’ve been such close friends with Jeff and Cheryl for so long that we really wanted to go and celebrate this event with them so we threw caution to the wind and off we went.

They had the reception at a beautiful Girl’s Scout Camp that we had held our church’s Girl’s Camp at for a number of years. There were a lot of great memories as we arrived at the camp and as we looked around, but the best part was seeing friends we had not seen for a long time. It was amazing how quickly my emotional batteries got recharged as I talked to our friends and got brought up to speed on family happenings.

We had the chance to see people that we worked at the Camp with and compare notes with the changes at the camp and how the camp had gone this past year; we reconnected with friends that had moved away and come back; and we all got a chance to feel really old as we brought each other up to date on our kids.

This weekend was one filled with visiting family and friends and, despite the fact that it made me really tired, it recharged me emotionally so much that I feel ready to face whatever comes our way in the coming weeks. So, to all my friends (those we reconnected with and those who are still in our hearts), I say Thank You; first for being my friend - you make dealing with my cancer so much easier; second for sharing your love and emotional energy with me - just being around you and talking with you makes it possible to get over the dark thoughts and through the rough times; and finally for the opportunity to be your friend - knowing that you’ll be there makes facing the long road of what’s to come bearable.

First off, you can probably tell my by the absence of my posts that this was a Chemo Weekend. It seems like the effects keep building and building every time I get a treatment. Each time I get to experience a new level of side effects.

One of the things I’ve noticed since I got diagnosed with cancer is how many people will respond with “My [fill in your relative here] has cancer.” It seems that everyone knows someone that has cancer or is themselves a cancer survivor. But the thing that has caused me to give it so much thought recently is that response… “My uncle had cancer”; its like saying “Yeah, the Titanic had a leak”. Now that I’m one of those that folks are talking about, I have a MUCH better appreciation for what cancer survivors are going through.

“My neighbor has cancer” doesn’t begin to describe the dozens of drugs that have to be taken just to make life bearable, and the hassle of keeping them all stocked and kept track of (not to mention the cost of all these fun pills!). It doesn’t begin to describe the multitude of surgeries (and to me there’s no such thing as “minor surgery”) that a cancer survivor has to submit to, and how much energy those surgeries drain from an already depleted body.

“My friend has cancer” doesn’t begin to describe the mess your body is in as you’re going through chemo; everything seems to be turned on at once. You’re sweating at the same time you’re freezing to death; you’re hungry, but you can’t eat for fear of constipation or diarrhea; your emotions are completely messed up so you can’t keep your head straight. And then there’s the host of other side effects that come from your particular flavor of chemo. It doesn’t even begin to describe the dark thoughts of wondering if the cure is worse than the disease; wondering if it will ever get better; wondering if all this pain and anguish is even working.

“My grandmother has cancer” doesn’t scratch the surface of what the rest of the family has to do to support the cancer survivor; the hundreds of miles put on the car for trips to the cancer center, the visits to the doctors for discussions using terms and words that you have no idea what they mean. All the time you have to invest researching treatments and alternative options because the doctors can’t know everything and then trying to figure out if the treatment is valid or some witch doctor concoction.

It never ceases to amaze me how much can be contained in such a simple phrase… “Yeah, Kevin has Cancer”