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Sandy

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.

Round 8

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

     After a rather troubling weekend following some pretty poor blood tests, I’m back on another round of chemo. Here’s the quick status update before the meds kick in and I doze off for the day.

     I’m still having problems with platelet counts. Today the oncologist  said it’s probably chemo induced and there really is no way to boost those counts. The alternative they’re hoping for is that those counts are tied to my cancer activity. Last Fall, when the tumor markers went up, the platelet counts dropped down. Their hope is if we can now get the tumor markers to go down, the platelets should go up. At this point I’m two weeks away from the last chemo, and the counts are still lower today than they were two weeks ago. So we’ll do this cycle and see what happens. Should be getting a new tumor marker count next week and 4-5 blood tests this week.

     If the counts continue to drop, I’m thinking about getting yet another opinion to be sure there is nothing else I can do. Once they get too low, a transfusion can be done, but that is only a temporary fix. Anything lower than they are now, and chemo is no longer an option, and we already know the cancer spreads when I’m off chemo. So it really is a day by day issue. Some days they start going up, other days they tank.

     Throughout this all, I’m emotionally quite drained. Things haven’t been stable since January, and everyone who knows me knows that I struggle with unknowns. Working really hard on turning the unknown into my best friend! It’s getting so familiar these days, so that shouldn’t be too hard to do. Guess I need to keep reading my own blogs on the subject, right?

     Thank you for following along. Your prayers are great, and very much needed. Couldn’t get through this without you.

– Sandy K.


PS: Day 1 on chemo this time hit me like a truck. A little unusual, so my plans this week changed from normal to “stay in bed and walk around a little” when I’m not visiting the doctor. Trying to avoid a hospital visit and transfusion. Prayers along that line are super appreciated! Will post another update after my home pump comes off on Wednesday. Blessings!

Time for Recuperating and Rethinking

Sandy & Christy out for a family dinner for Christy's Birthday
Sandy & Christy out for a family dinner for Christy’s Birthday. (Sarah and Aaron too!)

    Twelve days out from chemotherapy and feeling much more like a real person again! With me, the treatment my doctor prescribed usually leaves me very tired and somewhat depressed and withdrawn. Been fighting that with prayer, counseling, and of course the amazing support of my family. What I usually end up with is an up/down emotional ride ranging from hope to futility. Once the meds flush out of my system though, things get back to somewhat normal and thinking clearly becomes much easier.

     Last night, most of the family had an opportunity to get out and celebrate my wife’s birthday. Aaron and Sarah joined the two of us for a wonderful dinner at a new Italian restaurant in Southside Bethlehem. Awesome service and great food made for an enjoyable evening. Josh is on the Appalachian Trail (check the update on 3/10/2016) but was in civilization for the day so we got a chance to talk and catch up a bit. Anna was able to call from Georgia too. All in all it was a great day.

     Next on the agenda is a series of doctor appointments at the end of this week. I have meetings with my oncologist and primary care doctor to go over their current assessment of my condition and what plans are best for the future. We’ll be discussing how effective treatments are and what their current prognosis is.

     Thank you for your prayers through all this. I’ll post another update over the weekend sometime.

– Sandy K.

Round 7

Photo (right to left): Sandy, Christy, Josh and his girlfriend Nicole.
Photo (right to left): Sandy, Christy, Josh and his girlfriend Nicole.

We’re so happy for Josh and Nicole who began the adventure of thier lives on a thru hike of the Appalachian Trail. They left from Georgia this morning, and will be hiking about six months until they arrive in Maine at trail’s end.

If you want to follow their progress, here’s a link for their hiking blogs:

https://shmoopyhikes.wordpress.com
or:
https://trackmytour.com/ljVpR#1118148

They will be missed, but we’re so excited that they have this amazing opportunity to venture out! Keep them in your prayers for safety and what will certainly be a life-changing experience.


     It’s been almost a week since starting my first round of chemotherapy for 2016 (seventh round including last Fall). I have mixed feelings with this though. Yes, I am glad to be back on treatment, as based on my history, chemo appears to be the one thing my body has responded to so far in terms of knocking the cancer down. Thought we beat it in December! We try again.

     The flip side of this, however, is that we still haven’t found a strong enough non-toxic way of keeping those bad cells at bay. Last year we added a number of alternative ideas to the mix, but when chemo stopped from December to February, none of those were potent enough to compete with the cancer. Last week I had new tumor markers taken and yet another CT scan. The markers were all the way back to when I was first diagnosed, and the scan showed that tumors had returned, had grown in the pancreas and liver, and fluids were beginning to appear in my lung lining and heart. So we’re still searching for something that may possibly work long term. My doctor is still hopeful, lots of prayers are still being said, and my wife’s optimism is still unshaken. Some good fuel there.

     A few prayer requests.

     First: My cell counts are at a historic low for platelets and white counts. Friday the 11th and Monday the 14th they’ll be running blood tests to see if I’ll need a platelet transfusion or not. Please pray for my platelets to finally rebound. They’ve been on a steady decline for three months now.

     Second: With the low blood counts, they’ve had to take me off blood thinners, which leaves the clot that had formed in my leg on its own. We’re praying that doesn’t move, and no others form.

     Third: Low cell counts also mean I am at risk of bleeding. Again, prayers to get through this season without incident are appreciated.

(UPDATE: I passed the blood test on Friday 3/11. Platelets went up for the first time since January! Still low, but moving in the right direction. Finally. Next test after the weekend. UPDATE 2: Monday’s blood test (3/14) continued to rise on platelet counts again. Looks like no transfusion is needed, back on the blood thinners, less risks now, so I’m calling this an answer to prayer!)

     Fourth: We still need to find a long term solution to fight this. I can’t stay on this treatment plan forever, so we need to find something else that works for me. If a cure is out there, we’re asking God to lead us to it.

     Last: Emotionally, this has been an extremely challenging time. I waiver between hope and despair, knowing full well that hope is better. Prayer that God will keep me focused on Him would be awesome.

     Thanks again for your love and support.

– Sandy K.

Back on Chemo (Updated)

Out for a hike in jacobsburg Park.

After my blood test in Philadelphia on Tuesday, I was sent home again. Same problem, but a bit worse. The Center there says that my platelet counts were just too low to do chemo without causing potentially serious complications. At this point, they have no options to offer other than wait and see if my body recovers platelets again on its own. And of course, without treatment, this particular type of cancer is aggressive enough to run its course fairly quickly. Their estimate was that I’d have anywhere from three months to a year to live without treatment.

Obviously, we were not happy with that news, so we decided to check with my former oncologist again for more options.

She agreed that doing nothing would certainly mean the same, but her conclusions on why my blood counts were so low are different. Based on my past treatment history, she believes that it is the cancer itself that is consuming the platelet count, and if we hit the cancer with chemotherapy, then we should see my cell count rebound as before. Of course, she also admits that doing chemo with my current levels is something that she hasn’t done before, and carries a number of risks. So we’re left with the choice between doing nothing (which will certainly end with the cancer consuming me), or resuming treatment with the hope that as the cancer cells are killed, my blood levels will begin recovering.

How I wish there was a sure-fire option “three” to select instead, but in the absence of such a plan, we decided to take the chance and resume chemo tomorrow morning.

Friday, March 4 at 8am will be the first of many cycles of treatment. Our prayer is that God will not allow any side effects to create serious complications, and eventually I might find the successes we experienced this past December.

– Sandy K.

Back on Chemotherapy

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It’s been almost two months now since finding out that my cancer has returned and needs active treatment again. I would already have been going through chemo, but in addition to discovering higher tumor markers in January, we also discovered low platelet and white cell counts. That meant that starting any kind of treatment options to fight the cancer would also have weakened my immune system further.

This week, will be the third time heading down to Philadelphia to get another blood test with the hope of starting chemotherapy.

Two weeks ago, I had a bone marrow biopsy done to rule out any problems with my body producing new cells. Fortunately, everything looked fine with that test.

This past week, the doctors put me on a round of steroids to try and get platelets back up to stable levels. Tuesday morning, March 1 at 8:00am we’ll know if that helped or not. If all goes as expected, I should be staying at the clinic in Philly from Tuesday through Friday for a full round of FOLFIRINOX. I’ll try and post an update when results come back…

– Sandy K.


UPDATE: See post for Thursday, March 3, 2015

Shave for Sandy Fundraiser

ShaveForSandyOctober – December 2015 


    It wasn’t long after getting diagnosed that my son gathered many of our friends together from work and organized a fruitful and fun way to raise money for mounting medical costs. One month before our co-workers usually organize a “No-Shave-November” (growing beards and hair as long as possible), Josh decided to add to the mix by dedicating October as “Shave4Sandy” month.

     Everyone was invited to shave off their beards, hair, or whatever by the end of October, and then spend the month of November growing everything back! We figured there would be a fair showing of participation, but never expected the final results. By the end of December, dozens of people actively participated in the shaving, and even more contributed a total of $5930 towards out-of-pocket co-pays. It was amazing!

     All of the old posts can still be found at the www.giveforward.com website if you want to read through everything that happened during those months. Just click on the link below.

https://pages.giveforward.com/medical/page-j5zm184/