Seasons Change


So today’s post will be a little more difficult than most of the past ones. Mostly clinical stuff to share, and one thought. In the course of nature, there are shifts from one season to another. When those shifts occur, things change. With health, we apparently go through seasons too. Sometimes things are bright and sunny, and other times there’s a chill in the air, snow on the ground, and everything is longing for Spring. This past week, even though it’s June and summer is on it’s way, medically speaking, I’ve gotten a bit of cold air.

It's so nice to see green leaves and feel the warmer weather!
It’s been so nice to see green leaves and feel the warmer weather!

Just to catch up from the last post, this past Tuesday a routine blood test showed that my body was potentially producing more clots that it should. So that afternoon I was scheduled for an ultrasound test, and the next day, a CT scan that focused on blood flow in my chest (and a peek at the tumors too to see if any changes occurred). Today I got all the results and reviewed them with my oncologist.

Indeed, there were two new clots in my right leg (for a total of three now). More significantly, there is also a clot now in my right lung and pulmonary artery leading to the lung. The radiologist also noted this is causing right heart strain. They also found a thickening of the esophageal wall (no tumor at this time) adding concerns of possible esophagitis forming. Then they threw in a return of an enlarged spleen. The report finished out showing that the tumors on my pancreas, liver and surrounding veins and arteries are unchanged after three months of chemotherapy. Finally, at the doctor’s office, we received the results from my recent tumor marker test. This is the first time since last September that no improvement occurred after a month of chemo.

So what does all this mean? Well, considering I actually feel pretty good and am able to function like most people when not on chemo, it means I test really poorly and feel really good for someone in my condition! To be honest, I’d rather have it this way than turned around and feeling terrible when not much was wrong. I am very thankful to have energy to be outside, running errands, visiting places and family, and potentially getting back to work on a reduced schedule. So even though much on the inside appears to be in disarray, I have been able to enjoy a high quality of life between chemo cycles.

Christy and I have been trying to put all this together and for now have reached this conclusion. With so much going on inside my body, I now understand why chemotherapy cycles have been difficult lately and why I feel winded when doing too much. Today, it also seemed apparent that the path we’ve been on has begun to either plateau, or degrade (depending on what stats you look at). If chemo cycles mean extreme fatigue, and extreme fatigue means less activity and more clotting concerns, then it seems best to hold off on further chemo treatments until we can resolve some of the other issues going on. The last cycle will be it for now.

We’re also trying to get an appointment this week while visiting in Boston at one of the leading cancer clinics in the country. My doctor encouraged us that if we’re in the city already, why not see if they have any ideas we haven’t considered. Unfortunately any clinical trials out there are still not possible as my platelet count is half of what is mandatory to participate in nearly all cancer trial programs. So we’ll see if this clinic has any other options.

If no new treatments are available, we’ll continue with our naturopath and keep seeking out “alternative” therapies that make sense (there are way too many “snake oil” remedies out there still). Most importantly, we are going to take advantage of the energy God has given me to enjoy our lives to the full — something I’d encourage everyone to do by the way.

When I asked my doctor what her prognosis was without treatment, she simply said, “Truthfully, it’s all up to the Man upstairs!” Web sites show lots of statistics on this. But we’ll continue to put our lives in God’s hands and trust that He has the best plan.

Thanks for listening. Getting this out helps you to know how to pray effectively, and knowing your love and support during these difficult seasons means so much to me.

Blessings, Sandy.

Every Day Brings New Things


Alright…. so I admit, I don’t post many updates these days…. mostly because there’s nothing new to say. Things have been staying the same for days at a time, but then you have a day like today.

Dogwood blossom from our front garden
Dogwood blossom from our front garden

This morning was supposed to be a chemo day. But with the last cycle the way it was, Christy and I decided it was a better plan to visit with family in Massachusetts for an extended weekend instead. So we booked a B&B on Nantasket Beach (South Shore of Boston) and plan to meet up with my family, sort through a few things from my Dad’s estate, eat some fresh seafood, and weather permitting, take a ride on my sister’s lobster boat out of Cohasset harbor (where I grew up) and stroll the beaches for a few days.

Back to this morning… Instead of chemo, they called me in for a “quick” blood test. The results were somewhat disturbing. My platelets have fallen into the 40’s again, but of more concern was the D-Dimer results which had apparently tripled since last week. Simply speaking, D-Dimer tests help the doctor know if you have new blood clots forming anywhere. The elevated amounts triggered a STAT ultrasound exam at our local hospital today to check veins in my legs and arms. This past January, they found a clot in my right leg. Today they confirmed that the blood thinners I’m taking haven’t  fixed it (still there), and two more clots in two more veins had formed near the same area. There’s a fair amount of concern that the new ones are positioned where they could more easily end up drifting into my lungs, which of course would be bad news indeed. So they held me at the hospital until my doctor released me back to home with an increased dose of blood thinner meds and a script for a follow-up CT scan tomorrow to check lungs and tumor status.

All in all, it was a bit of a bummer day. But… we learn to take it in stride, and just keep living our lives as full as possible. That is something we are indeed enjoying. Since returning from Paris, we’ve put a new swing & grill in the back yard, planted our annual garden, been out to eat a bit, done some home improvements, listened to live jazz at a festival in Allentown, and now we have this beach trip planned. Despite the fact that I’m not testing very well right now, we are still finding something to enjoy in each day.

So tonight (Tuesday) they run a tumor marker test from today’s blood draw, tomorrow (Wednesday) is the CT scan, and on Thursday I have another appointment set up to go over all the results.

One more thing. I did have a very constructive conversation with my oncologist about modifying (doing it less frequently) or ending chemotherapy. In my mind, I’ve decided that quality of life is better without it. It is such a drain on energy and emotions, and has no promise of cure. Dr. Anna understands and was quite sympathetic. She also believes that the increased clotting may be affecting my ability to tolerate treatment, especially if they find that small particles are indeed getting into my lungs. So this is a conversation still in the works. We’ll look at all the test results later in the week, pray, stroll the beach this weekend, and then make a decision.

Thanks for all your prayer!

Sandy.

Could it be Summer?


This past week, from getting chemo on Tuesday all the way through to Sunday afternoon, I spent most of it either in bed or curled up on our couch waiting for chemotherapy side effects to end. Of all the treatments received since last September, this was clearly the worst.

Bethlehem Steel Stacks
Bethlehem Steel Stacks

But today, things have begun to change. It’s Monday, and here’s my view as I sit and write this blog. Weather is 72° and sunny. The birds are singing, and sitting here on the Lehigh River is absolutely perfect. (It reminds me a little bit of relaxing by our Saco River in New Hampshire!) I cannot express how it feels to be alive and human again… breathing fresh air instead of cancer drugs… hearing birds singing instead of IV infusion pumps chugging away… and seeing blue sky, sunshine and still waters instead of the inside of our (wonderful, yes) house. Thank you God that despite all those drugs and chemicals poured into our veins in the hope of medical miracles, You can flush them out and bring us back to the living once again! I am so very grateful!

So, of course, though glad to have this experience behind me, I have quite firmly decided that I do NOT want a repeat of last week. The real question is: “What went wrong?” The nurse said (of course after all the infusions were done on Tuesday) that they increased my dosage. Was it too much? Was it mixed incorrectly? Was there some contamination, or a virus hanging out? Was my body just not ready for that cycle? FOLFIRINOX is a very toxic and aggressive chemo, designed specifically to attack Pancreatic cancer which is still quite deadly. Am I just getting to the point (as all 5FU patients eventually do) that I just can’t handle it? Or… am I just being a wuss?

Then there is this other option.

In my counseling sessions over the past few months, there’s been a lot of talk going on about quality of life and how treatment affects that. So far, as anyone else out there with an incurable disease knows, this question of continuing or quitting treatment is not easy to address. If no treatment means no life, than theoretically ANY treatment, no matter how severe, gives quality to life since you are indeed living through it. However… and this is the big part… if those treatments cause half (or more) of your life to be sick and unproductive… and there is no promise of cure, or even how much longer you will live… and if the treatment cycle is tagged “indefinite,” or if the treatment toxicity is so severe that it may even shorten your life… Well, you see where this all leads. Ultimately we must be satisfied beyond reasonable doubt that HOW we live our lives is what determines the quality of our life. Knowing that our choices make each day truthful, meaningful, purposeful, and special for those we love, live with, and work side by side is what makes them “quality”.

Just to be clear here, I am not discussing assisted suicide or mercy killings or anything like that. Choosing how to live is vastly different than choosing not to live. Sometimes quality of life is trusting that God has your days numbered already, so rather than giving up on life and having someone take it from you, it’s giving INTO the life God has planned and already portioned out… long before you were even born.

In truth, six months ago in prayer, I felt God told me I have fifteen more years to live. That was after my diagnosis and during the first few cycles of chemo I received. Sure, that’s just a Voice in prayer… but that Voice has been a guide for me the last 3o+ years of my life. “That” Voice has never let me down through thirty years of marriage and family, cross country moves to serve the Lord in ministry, multitudes of pastoral care decisions… all the way from building and planting a thriving church from nothing, to leaving it ten years ago. That Voice in prayer is one I have always been able to trust. So why not trust now?

Whatever comes next (no, I haven’t made a final decision yet), whatever it is, it will be a step of faith and trust. And the best part of faith is that God will meet you where you’re at. If you act, but heard wrong, well, He’ll correct you. If you’re in panic mode about choices, He’ll help calm you. And in the end… steps of faith always leave you falling into His loving and capable hands. Really, there’s nothing to worry about when you pray and act in faith.

Finally. When… not if… when life finally comes to an end, heaven awaits. And truly, that’s not such a bad option! After all, we’re all headed there one day. We just don’t know which day it will be. So we do need to make EVERY moment count with all the “quality of life” we can possibly muster up!

Blessings,

Sandy K.

And so the routine continues


So I realize it’s probably not the best time to write an update when you’re on day 3 of a rather difficult round of chemo… but I haven’t posted much since returning from Paris, so it’s time. Here goes.

Our table at a French Cafe in Fountain Hill near our home.
Our table at a French Cafe in Fountain Hill near our home.

We got home from Paris where everything was magically perfect. Perfect health, perfect food, perfect companionship, perfect pace to see perfect exhibits at amazing museums. Such a lovely break away from cancer, chemo, and decision-making on this nasty disease. We loved the trip so much, for Mother’s Day, I took Christy to a French restaurant near our home that got great reviews. I don’t know though. It just wasn’t the same. (And none of that crispy, crunchy bread to much on?? Every meal in France had a fresh baguette at the table!)

We realized the vacation is most definitely over. Thank God for all the wonderful memories though. Perfect. (April In Paris)

 

So on to the news.

The first blood test back from Paris had my highest platelet count (98) since last winter. Something worked over there! By the second day, it had already dropped into the 70’s. Got a round of chemo which went okay, and platelets hovered between 50’s and 60’s.

A week later I found out that they also ran tumor markers on that first week back. My primary markers have fallen from a high in March of 2700 to somewhere in the 900’s now. Both other markers they are tracking have also dropped which is of course all good news.

This week, I went in for treatment and platelets were again in the 50’s. I got a slightly higher dose of chemo anyhow, and the past three days have been the worst. No energy, no appetite… just feeling sick and wondering why I’m doing this at all. I went to the doctor’s today to get the home pump off, and of course they were all concerned. Got a liter bag of magnesium via IV, and two kinds of anti-nausea meds, plus a prescription for another to take tonight. Basically, I just feel all chemical-ed up and sick & worn down just about everywhere.

My next counseling appointment is on Tuesday, and we’ve had numerous talks about staying on treatment and how that affects quality of life. Needless to say, we’ll have much to talk about this week. There’s a big part of my mind that does not want to ever repeat these last few days. Lots to think about this week.

So I’m thankful for being so blessed in travels last month, and I’m also thankful that the tumor markers have fallen over the past few months of treatment. Up until this week, I really felt I could handle all this and keep up with treatments. What I need prayer for now is renewed strength to first, get through this terrible feeling, and second, to make sound decisions about what to do in the future. God’s guidance would sure come in handy right about now!

Thanks for your prayers, love, and compassion. So very much appreciated.

Home from our Paris Trip

Horse
(Click on the image to enlarge)

I’ll be brief today… Late Saturday night we returned from our anniversary trip to Paris. As I said in the “Rise Above” post, all went incredibly well. We ate, drank, walked, hiked stairs, and enjoyed all the sights for ten days! (You can read all about it at the April in Paris web site if you like.) I felt more healthy over there than I have for the past year.

The most important thing is that I had no medical issues while away, and Monday, even tested for my highest blood platelet count (98) since last year. Guess my body likes Paris! By Tuesday, my counts had already dropped 16 points to the low 80’s. Honestly, it’s got to be in how they make their foods… yup, the ones the US doesn’t allow to be imported because they’ve been doing it the same way for a thousand years over there. Go figure.

My oncologist put me right back on chemo yesterday, so today I’m on the second of four days of treatment. Not counting cycles anymore. They just keep coming every two weeks like clockwork unless I plan a trip away. Might have to do more of that!

As always, we appreciate your prayers through this ordeal. As far as I can see, it’s not something that will end anytime soon. My doctor just submitted an extension for my disability leave through January of 2017. I hate being away from work, but until we find a treatment plan I tolerate better, that seems to be the way it is. While there are many interesting things out there for cancer research, they still don’t have a cure for my version, so we work hard to maintain health and wait on God and science to see what’s next. I’m learning to be a patient man. Well, working on it at least!

Sometime soon I should be getting an updated tumor marker and CT Scan to see how all is going. I’ll keep you posted when those come in.

Until then, thanks again for all your prayers. It keeps me going!

Lasting Memories

So I couldn’t decide where to post this entry… whether here, or on our April in Paris website. Well… since it had to do with traveling and building important memories into your life through the things you do with the people you love, I decided to put it as the closing entry on our Paris trip we just completed.

Please, though, check it out at this address.

One Final Thought

How important it is to take the time out to build these memories.

Rise Above

So we are back from Paris, and what an incredible trip it was in so many ways. From the point of view of our anniversary trip, it was romantic and just as special as a 25th anniversary should be! From a health perspective, there were NO issues for me on this trip. No pain, no digestion problems (even though we ate just about everything there was to eat in Paris), no blood related issues… As a matter of fact, for the first time since my early remission in January, I felt as though there was no disease at all in my body. Perhaps we should have stayed there! Anyhow, if you want to see any of the pictures from our trip, check out our April in Paris web site here.

cloudsAs we were flying home, however, all I could think about was returning, not to work or routine, but back to cancer and chemo. The contrast from feeling so good, and knowing that in just two days they’d have me back on therapy, was so hard to wrap my head around.

Then a thought came to mind as were flying. The pilot on our flight talked about a wintery mix of weather on the ground, but we were flying above the clouds where the sun shone bright. As I thought about it, for the last 10 days in Paris I had no anguish over the disease at all. The busyness of the trip…. good food… good company… sights to see… They all helped me to rise above my condition… just like the plane was rising above the terrible weather to where all was sunny and bright.

As we flew above the clouds I thought, “How can I keep rising above all this so life can continue to be enjoyed?” Because as most cancer patients would agree, I hate chemo and the terrible things it does to your body while it tries to fight the cancer cells.

As much as I would love to just quit treatments, I do know that without it, I’d be on a short path to where planes can’t fly. And with it, I was able to enjoy Paris, travel to North Conway this past January, be with my wife and children, and look forward to meeting up with Josh and Nicole when they finish the Appalachian Trail in the Fall. These things I CAN do, and knowing that helps make the treatment understandable, even if it is not so easy to bear.

I also owe many thanks for all the prayers that have been offered up. They have made a difference!

One bit of good news from my doctor visit today… Paris food and all the walking we did seems to have been a huge boost to my platelet counts. I hit 98 on the blood test today! Though still lower than normal, that’s the highest my count has been since last winter when the cancer was virtually undetectable, and it’s nearly twice where it was just before departing to Europe just two weeks ago. Even more important, crossing the 100 mark would open the door to a much wider selection of treatment plans through clinical trials. Two weeks of vacation and I’m so much closer!

So all I know is this… if they start having problems with my platelet counts again, we’re heading back to Paris!

Good News for our Vacation

VacationSo I know I said no news was good news… but good new is ALSO good news and I had to thank everyone for their prayers. I had my blood testing done yesterday to be sure it was safe to travel. And not only hadn’t my platelet count fallen, it actually rose to the highest level it’s been since January! (Got to a “78” this time.) I’m working my way up to the magic “100” I need for more treatment options. When combined with the dropping tumor count from earlier in the month, that all seems to indicate the treatments are working and getting things back under control.

The doctors were glad we were traveling, as good spirits are an important part of getting through difficult diseases. They were especially glad the test results were positive, and are hopeful I’ll have no issues on the trip. After seven months of fighting cancer, I’m so glad God worked so much out to be able to escape and rest!

As a side, we heard papaya was good for platelets. Been munching on those in the picture here for a few days now. Maybe there’s something to that… I’ll keep eating papaya for now!

God bless, and thanks for all your prayers. I’m schedule for my next round of treatment after we get back on May 3rd and will continue these updates when we return.

Until then,

Merci très beaucoup!

Saturday Afternoon

Saturday1I’m sitting out on our back porch in 70º weather… FINALLY!! Everything seems perfect right now, and if you told me I had cancer, I just wouldn’t believe you. Two weeks out from the last round of chemo and I’m feeling so close to normal it really makes me wonder, “What would happen if I quit treatment?” It’s very tempting when you start feeling better after all those chemicals clear your system. On most therapy days I tell Christy (in a whining voice), “Mommy, I don’t want to go to school…” She understands, and then off we go. But today, thirteen days out, I feel human again.

Usually, I would head back in Monday morning for another round. But this cycle we skip and go to France instead! That’s so much more fun. I’ve got my med bag packed with needles, blood thinner, a whole slew of digestive pills for all scenarios, and my new mix of nutritional supplies. A few weeks ago I got a new naturopathic doctor and we re-adjusted my supplements list. The new regime is working great, and it has less pills to take too. Still, that bag takes up a big portion of my suitcase. But if that’s what it takes to do the trip, I’ll make room!

I do return to the doctor Monday afternoon for a last blood test and a set of paperwork in case something does happen overseas. We want the doctors there to know what I’ve been up to, so my oncologist will condense a three inch thick medical chart to a three page report to bring with me.

While we’re overseas I probably won’t be posting much here. If you like, you can check out the April In Paris website and follow along with us. Unless something surprising shows up on that blood test, I’ll catch up with the medical updates in May. No news is good news then.

Au revoir for now!

Status Report


This week has proven to be an interesting one… For the most part, I’ve been feeling pretty good, despite having to run a dozen or so errands to get everything together at home and prepare for our upcoming trip.

Josh-1bOver the weekend, we got to spend  a lot of time with our daughter, Anna, which was such an encouragement! Sunday night, though, I started getting rather severe abdominal pains, similar to the ones I got last Fall around the third cycle of treatment. Coincidently, this past cycle was also the third one since I started back up again in March. This time around, we had the right pain meds on hand (“right” means the ones that finally worked last time this happened after trying three different prescriptions). So by Monday morning, things were much better. Been fighting off a few lingering pains this week, and been getting tired from the busyness of a lot of activity. The doctor thinks it might be a reaction to a new shot I’ve been taking each night for post-chemo recovery. Last one of those is tomorrow. I’m happy that the next six days have very few things planned. I’ll take advantage of that to simply rest up.

At my doctor’s appointment today, everything was about the same on my tests. Blood platelets are still holding firm in the 50’s, so the “glass is half full” for needing to be at the magic number of 100. Platelets need to be at 100 to give me an option to enter any clinical trials for pancreatic cancer that are out there. None of those are open to patients with less than that count on their blood tests. So I still need prayer for those numbers to improve… dramatically.

Otherwise, we talked about the trip Christy and I have planned, and got the green light to skip the next round of chemo and fly away for ten days. If you haven’t heard, four years ago we planned a vacation to Europe in celebration of our 25th wedding anniversary. Then I got hired at a new job, and it was either cancel the trip, or not get hired. So we canceled the trip and just never got around to rebooking. With life the way it is now, we decided not to put things off anymore, and celebrate our “silver” anniversary… finally! So on April 19th we fly to Paris. No big agenda: just relaxing, away from all this cancer stuff — that is, with my big bag full of medications, shots, and clinical paperwork… “just incase” (as the doctor said). But we’re going, and that’s the important part. We plan to visit lots of museums, sit for hours in street cafes, visit at least one new park a day, eat gourmet food in the evenings, and keep things simple and stress free. If you want to follow, we’ll be blogging at AprilInParis.kravette.net.

Otherwise, I’m posting two pictures with this blog entry (and you can click on the photo to see a full size one). The first one above is from my son Josh, as he and Nicole continue hiking the Appalachian Train this Spring, Summer and Fall. This weekend, they were on the Tennessee and North Carolina boarder, about 250 miles from their start in Georgia. (You can follow them from links at kravette.net if you like.)

The other picture, here, is the first watercolor drawing I’ve done since grade school, way too many years ago to count. Watercolors_1bA dear friend from work came by yesterday with a whole basketful of art supplies, and said, “Let’s be creative and do something fun.” She knew my counselor had recommended numerous times to spend some time dwelling on things low stress and creative… a distraction from thinking about my condition and treatments. Kat took her up on that and we did some painting yesterday afternoon. It’s not a work of art to say the least… but that’s not the point. The idea is to get the brain to focus on other thoughts… or no thoughts. Just be creative. Well done, Kat! Thanks so much for the visit.

That’s about it for this week. More next time.

Today Was a Good Day

Good_Day - 2
A chilly day on the streets of Bethlehem.

Today was an especially good day. And believe me… when you’ve been on chemo for seven months, we LOVE the good days! So let me explain what made the day so special.

  • The day started with a doctor’s visit.  It took longer than I thought, so I decided to treat myself to breakfast out after the appointment. An omelette, a bit of juice, watching the streets of Bethlehem out the window… Quite relaxing.
  • After breakfast, I got a phone call from an old friend from my years at Horizon Christian Fellowship in San Diego. But honestly, friend is too simple a word. Jeff was one of the assistant pastors in San Diego when I first moved there in 1985. He was the first Christian counselor I spoke with during those early transitional (and troubled) years as a young Christian. He’s also the one who baptized me in Mission Bay. Jeff was always a compassionate and kind man, and conversations with him drew you closer to the Lord. Today was the first time we spoke together in more than 10-15 years I think. He’s still serving the Lord in Fort Lauderdale, and has done a lot of ministry with cancer patients. It was so comforting catching up and being encouraged in the Lord in my journey with cancer. It was wonderful.
  • Next on the list was a visit to the optometrist. Though they thought my new glasses wouldn’t arrive for a few weeks, they came in in just seven days. Nice new lenses, self-tinting to polarized sunglasses outside (perfect for spring and summer), and they don’t give me the same headaches my old ones do after wearing them for a few hours. I can see!
  • After that, I spent the afternoon shopping for a perfect coat to take to Paris. Picked up a venti Flat White with coconut milk at Starbucks, walked around a mall or two, and it felt so good to have the energy to be out and about. Finally drove to a leather outlet store about an hour from here, and found just the right coat for April in Paris! Quite happy with the purchase, and the price! I love a good sale.anna_visit
  • About an hour after I got home… guess who surprised me with an unexpected visit? My daughter Anna! She flew up from Atlanta for the weekend just to be with me! I couldn’t believe she and Christy kept that a secret… but what a nice surprise. Looks like it will be a wonderful weekend coming up!
  • For dinner, we decided to try a Chinese restaurant that was highly recommended to my wife from a co-worker. It’s called Asia and about 15 minutes from here, just outside South Bethlehem. It’s ranked as one of the best 100 Chinese restaurants in the country, and they lived up to that reputation perfectly! Very authentic food, great taste and seasonings, and excellent service. We’ll visit there again!
  • And tonight, the three of us are watching “An American in Paris”…. just to get in the mood for our upcoming trip.

So you see, the day was perfect from start to finish. What I learned is that when you have the energy, get up and get out and do things you love to do with people you love and want to be with. No putting stuff off. Do those things that are important to you now because who knows what tomorrow brings.

Oh yes… you know how when you go to a Chinese restaurant they give you those fortune cookies at the end? Well, the picture below speaks for itself. Such a timely message when fighting cancer. Honest to God, I’m not making this up… An appropriate end to the perfect day!

 

Good_Day - 1

 

Follow-Up for Three Rounds

Three Graces Farm in Maryland
Three Graces Farm in Maryland

I’m here at the oncology office to get my portable pump off and a liter of fluids pumped into the veins… Just had a quick chat with one of the doctors about how the treatments are going after the last three rounds of chemotherapy.

They’re following three tumor markers. The one for pancreatic cancer has dropped from somewhere around 2700 to about 1700. That’s GREAT news. Making progress with 1000 points disappearing.

The other two cancer markers they’re tracking weren’t so good. One is actually up (the one for ovarian cancer… go figure) and the third stayed the same.

As for platelets, no change. Still too low. A bit frustrating.

What that means is we’re making progress, but it’s going to take time and there are still other issues going on. I’m learning to be a patient patient. And while Christy and I are waiting for things to stabilize, we’re trying to enjoy life as much as possible. The picture on this page is from a trip we took to my wife’s brother and sister-in-law’s farm in Maryland. Such a beautiful place to relax and enjoy nature. More trips like this are a must!

So everyone, remember to enjoy life each and every day. We just don’t know what the future holds, so don’t put anything off…

– Sandy K.

Quick Update

moon
Late night editing….

It’s quite late at night (or very early in the morning actually)… Been fixing up web sites, etc. But I wanted to post that this cycle of chemo seems to be going MUCH better than the last one. I’m done with day 3 now and have much more energy than last time around. Thank you so much for everyone who’s been praying for me.

Tomorrow I get my home infusion pump off, and will get results from blood tests for both platelet counts and tumor markers. I’ll be posting those results later in the day.

God bless!

– Sandy K.


Morning update:

Woke up this morning… went to the kitchen to make breakfast, and the first thing I picked up from the fridge gave me that terrible feeling of neuropathy back in the hands. One of the meds in my chemo cocktail causes nerve damage, one side effect of which makes anything cold feel like it burns your hands and feet. Another side effect is weakening of the hands too. This should pass… when they stop giving me that med, something that will be part of my conversations today at the clinic. God is good though, and we’ll just place this all in His care.

Round 9

Got to spend last weekend with family in Maryland and this weekend with family here in Bethlehem. So nice to see everone!
Got to spend last weekend with family in Maryland, and this weekend with family here in Bethlehem. So nice to see everone!

     Well, here I am at the clinic for round 9 of chemo. Just started IV with meds, and will be here today for about 6 hours. After that, they send me home with a portable pump that continues dispensing meds until Wednesday, then swap that out for another portable infusion pump that injects another med on Thursday. After that, it’s about a week of recovery followed (hopefully) by a few days of feeling normal again! Getting used to this cycle.

     Blood test this morning just came back. Still having a problem with low platelets. They just aren’t moving up. Sigh. Of course Christy reminds me they aren’t moving down right now either. (Glass is half full!) Just leaves me weaker and weaker with each cycle, so I have to find a way to strengthen the body more when energy levels allow.

     Am I getting discouraged? Well… last few months, YES. February through March were terrible for me. But this past week, I decided to trust more in God’s promises of giving me time to enjoy life, my wife & family, friends, and the world around us. So rather than focusing on what’s been wrong and the dismal prognosis every web site on the internet gives regarding late stage pancreatic cancer, I’m going to meditate instead on the reality that I am alive today and can fight this so far. The future is such an unknown, so believing in faith is a much better option then giving into fear for what may change at any moment. Faith just seems to be a better option.

     If you can continue to pray that we find a solution to low platelet counts, and also pray that treatment is effective in controlling the disease, that would be awesome!

     By the way, the doctor cancelled my tumor marker tests last week. Not sure why, but they said they’d run that tomorrow, so later in the week I’ll post an update on how successful the treatments have been so far.

     Also, April 19th Christy and I are taking eleven days off to travel. We’ve put off our 25th wedding anniversary too long and decided to take it now (4 years late). It should be a relaxing trip with virtually no plans other than to get away (Paris), enjoy each other, sunshine, walking through parks and busy streets, sitting in a cafe until our coffee and pastry are done, enjoying a few gourmet dinners, and seeing an art museum or two. Most importantly, it gives us a chance to get away from doctors, tests, treatments, and cancer for a little while. Really looking forward to that!

     Thanks again for keeping us in your thoughts and prayers. So much appreciated!

– Sandy K

Round 8 (Updated)

View from our front porch. Spring is in the air already!
View from our front porch. Spring is in the air already!

     I’m not sure why, but this round of chemotherapy left me in bed for three days, and now, even though I’m on day 5, the effects are still slowing down my energy and activity. It may be because of the platelet issues I’ve been having (this cycle was started at the lowest point I’ve been to receive chemo). Whatever it is, it left me curious to see if it is working to help, or if the side effects are going to create more health issues than it’s worth.

     The answer to that question will come in part on Tuesday. First of the week I’ll be getting a blood test to see how the platelet counts are holding up. They’re also going to run a new tumor marker to see if the chemo has helped slow down my cancer activity.

     I’m no doctor, but I understand that platelets “stop bleeding by clumping and clotting blood vessel injuries.” (wikipedia quote)Again, wiki tells me that “platelets in healthy Caucasians is 150–400 × 10 to the 9th power per liter.” My platelets in January were 91, and at the start of my last chemo cycle were 53, dropping about 5 points a week. Chemo typically knocks those numbers down for 7-10 days, and then hopefully they rebound. Mine haven’t rebounded yet between these past two cycles. If they don’t rebound after this cycle, then continuing chemo may not be an option anymore. If they drop below 50, most hospitals will order a transfusion. My oncologist waits until they drop to 10 before doing that, or when there is uncontrolled bleeding. Obviously a nervous proposition as bleeding becomes a real issue when your blood has nothing in it to help it clot. No power tools this week!

     They are also monitoring three different tumor markers. One for pancreatic cancer, one for intestinal cancer, and one for ovarian cancer… No, I don’t have ovaries, but men can form cancer cells that are the same as those women get who have ovarian cancer. All three of these are elevated in me. Last fall, the one for pancreatic cancer measured over 3700. (Normal is usually less than 100.) By January, my level had dropped to 140. At that time both the CT scan and PET scan indicated my cancer had “resolved.” Two months later when I was retested in March, the tumor marker had already shot back to over 2700, and a new CT scan showed the tumors had returned, grown, and were essentially like my initial scans. That didn’t take long at all.

     What does all this mean? I happened to get a very aggressive form of cancer that is simply a beast. Cure rates are dismal. The survival rate for my diagnosis is about 1%. Emotionally it’s been an up and down roller-coaster in my soul and for my family. Predicting the future is unreliable, so we just take it day by day, test by test, and ask God to guide our decisions and give us peace along the way.

     Thank you for praying with me on this line. Next week I’ll post how those blood tests came out. Fingers crossed, prayers said.

– Sandy K.