For something different than the usual posts, check this page out… thanks to the requests of friends from former New Hampshire days!
It’s been a week since starting with Hospice. I’m glad to have made the choice when I did. Physically, my body has most definitely begun a new chapter in this story, and placing myself in the hands of pain management specialists is turning out to be a good place to rest.
Abdominal and chest pain, loss of appetite, digestion problems, and more have become quite the issues lately, pretty much increasing steadily. I’ve been placed on 24 hour morphine with time release pills (150mg/day), and also with faster acting hits when needed. One of the most difficult side effects of pain meds at this level (combined with pancreatic failure due to the cancer) is the ability to process foods. The past few days we’ve tweaked meds to try and manage that better, but honestly, that is an area still in need of much prayer as the doctors and nurses try to find a mix that works best for me. Still working on that. Due to the mix of issues, I’ve also signed off to refuse any future feeding tubes. I mean really, will any bottled supplement ever compete with Christy’s culinary skills? I think not.
Other side effects… well… I can no longer drive. I’ve been told it just isn’t safe while at this level of sedation. I’m also much more drowsy than I’ve been before and it’s amazing how easy it is to drift from reality to dream-land in just a few moments when the eyes close. There are times here and there when telling the difference between the two is quite the challenge. I suppose I should just take advantage of this strange blur of thoughts & realities and write a movie script or two!! One of them might be a big hit in the psycho-drama genre! I’ve also experienced a few panic episodes recently, probably due to those blurred lines. This has all been a bit odd.
I do have an amazing team of people at Hospice and at home, however, guiding me through these changes, holding my hand each step along the way, and slowly but kindly reminding me that more changes will come. I know they’re watching out for my emotional well-being and that of my family for a journey I’ve spent the last year preparing for. And the lead nurse reminded me in the most gracious and light-hearted way yesterday, that she has far more medication in her little bag than I could ever muster up in pain. It was her way of encouraging me not to be anxious about anything but to focus on life instead. Nurse Kelley is the best!
Speaking of preparing… What a blessing these past ten months have been. We owe God a mountain of gratitude. There are so many others who get diagnosed with the same late-stage pancreatic cancer who had so little time to complete their lives. For me, not only have I been able to maintain a satisfying degree of physical health between chemo cycles, but this has also been an amazing year of healing and restoration emotionally and spiritually. This has been time I really needed to right some wrongs, get old “To-Do’s” crossed off the list, and set my life in order. I think the old “bucket list” is done. Might be time to make a new one to fill the time still at hand!
And even though we’ve moved on from oncological treatments, I want to recognize Dr. Anna and her oncology team at VITA Medical. I do believe that without their help and care, things could have been much worse for me. For a small town clinic, it has always been amazing how right on they’ve been when I’ve sought second opinions from much larger cancer care centers in Boston and Philly. Their care is among the highest available in the medical community and they were always pleasant to work with.
So where does all this leave me? Honestly, I’m not sure yet, but am fully determined to make each day, each week… however long I have… count for something meaningful in God’s sight. Here’s what I’ve learned from the past and what I’ll be focusing on in the days to come.
- I confess that since leaving our years of active ministry, my closeness to God has been spotty. Never lost my core faith, but I feel more like the woman clutching to the hem of the Lord’s garment than John who leaned on Jesus’ chest at the last supper. I know clutching still counts, but closeness is better and that’s where I long to return to. Bible reading, prayer, fellowship, reconciliation… these things are all important. And church… well, it’s like family. None are perfect. But living without either is just plain miserable in the end. Community is about staying connected and contributing what you can to the whole. No more excuses that it doesn’t work out. You’re a part of it, so help make it work out. Right? We can all do that in our immediate (or “birth”) family and spiritual family.
- I believe the last ten years have had some difficult moments with my children. I mean really, there was a year back a ways when all four of them were teenagers. O.M.G. was that time hard. Now they’re all in their 20’s and things are so much better. For any parents of teens, please let me encourage you to learn from my misses. Love them first, fix them last. Pretty simple. With the time I have left, I choose to focus on love. And thank you kids, for being understanding and patient with me all those years!
- In marriage, there just ain’t nuttin’ worth living in discord. The Bible says to esteem others higher than yourself. Showing respect, finding understanding, making sacrifices for the other… This is what makes marriage work. I am so blessed that I can say after nearly 30 years of wedlock, marrying Christy was the best thing to ever happen. She is my angel. My prayer now is that I can communicate that 1000 ways every day!
- At the end of today’s list, I am also setting a goal to find as many ways as possible to do activities which focus my mind on life and not looming death. Been struggling with that, but I know it needs to be done. So hanging out with visitors, getting out to do things that CAN be done within my new physical limits, playing piano or working on art, reading… etc. Just looking for things that help my mind focus on good. That’s what’s important.
This is certainly a difficult time for so many of us. Let’s make an agreement to walk through it together with God’s help. So I’m here for you, and it is comforting to know that you’ll be there for me and my family. Maybe, with faith, we can keep things going for a very long time to come!
Yesterday afternoon Christy & I had our first visit from Hospice Care. I must say, they are really good at doing a really difficult job. We were able to get a grasp on the services they offer and then tie that into things that are important for me and our family right now.
First, it is clear that their number one goal is to make sure that I am comfortable and receive whatever care is necessary to stay comfortable regardless of how the disease progresses. They have an amazing nursing and medical team that’s available 24 hours a day and are committed to making things easy for us to manage.
Second, it was assuring to see that they are also available for my whole family for everything from information services, to compassion, and to managing the very practical things that need to be addressed in the coming weeks and months.
Third, it didn’t take long to realize that if I’m not on chemo, this team is much better equipped than my oncologist to manage my medical care in a way that is more targeted to the decisions we’ve already made. For instance, instead of running countless tests that produce more and more lab results, charts, and statistics, their focus is simply on, “How do you feel today, and what can we do about that?” I’m already sensing that this reduces my worry. Since my test results are generally much worse that how I actually feel, I think it will also help keep my mind focused on what’s most important: living and finding joy in each day.
They also reassured us that Hospice is all about receiving proper care. It’s not a path to death, and many people receive Hospice for a while, and then recover and go off their services. There’s a lot of flexibility here.
All in all, we feel quite confident that we’ve made a good decision in contacting them.
Lastly, people often ask what they can do to help me out. The answer is quite simple. Let’s not wish away this valuable time by wanting things to be different than they are. I’ve spent a year researching options in and out of the medical system, and in and out of the country. I’ve had multiple doctors, naturopaths, alternative care specialists, and counselors all come to the same conclusion. Short of an absolute miracle, things aren’t going to change. So while we all have faith that miracles can still happen, this too is completely out of our hands. What we can do, however, is use this time to be close, sit and visit together, and do simple things that show respect, care and compassion. Just as it was in the beginning of this journey, short visits are so important and meaningful. Honestly, nothing sucks more than having terminal cancer, than having terminal cancer and spending many precious hours alone. Companionship is always appreciated.
That’s about it for now. Thanks for listening, and God bless!
It’s been five weeks since my oncologist ordered a test to see if I could try immunotherapy. This is a treatment that essentially helps the body’s immune system fight cancer cells, so there is not the same level of toxicity as with chemotherapy. It has been approved for a small number of cancer treatments, but is now in an experimental stage for other kinds of cancer (like mine). The requirement is that your tumor has a certain structure to it, so before starting the treatment, a sample of the tumor itself has to be sent off for testing.
About two weeks ago, they discovered there wasn’t enough tissue left from my September biopsy to get a good test done, so off for another biopsy I went. And then waited again.
Yesterday my doctor gave me the results. I don’t qualify for the treatment. It was a bit discouraging as I was hoping to have a new option for treatment.
So we press on. Since other test results show a progression of the disease, the next step is to get me hooked up with a Hospice home care team to help out with pain management. That’s beginning to be an issue, so we’re trying some new meds as well as some alternative care products that may help to control the increasing discomfort.
Honestly, it feels like I’ve crossed a somewhat frightening horizon line here. But when I look back over the last year since getting diagnosed, I can’t help but be thankful, instead, for all that God has done. It is always a miracle to be given time. It gives you the freedom to say things that need to be shared, do things that were important to finish, and be with the people who are special in your life. The time spent with family has been precious. And I can’t even begin to express how blessed we’ve been to reunite with ministry friends from New Hampshire and California. Christy and I spent a large part of our lives serving together in church. Reconnecting with old friends was special. Many thanks to everyone who helped make that possible.
So at this point, we hang on to those memories, move forward, and confidently wait for whatever God has next. As many have reminded us, He still works miracles!
So I pulled up my CancerCare website and honestly expected to see that it has been a few months since writing anything. To my surprise, it’s only been a month. But still, I know that’s much too long a gap in communication.
I have two excuses for the delay (well, three).
- Believe it or not, it’s been five weeks and I’m still waiting on the results to see if I qualify for immunotherapy. Yes, someone obviously dropped the ball somewhere in getting this processed in a timely manor. But I have no conclusive idea where that blame falls. All I know is the lead oncologist has been quite absent from the office this summer, and from what I hear, has further plans to be gone through July and August. Things just don’t get done with the same urgency and persistence without her there. Lord, I pray they get that worked out. I’ll call on Tuesday and hopefully have some news. Taking longer than a month to run a life critical test is most certainly not acceptable.
- The second excuse I have is that for the past few weeks, I’ve been facing increasing discomfort. My last chemotherapy cycle was on May 17th, so it’s been almost seven weeks without it and my body certainly feels the effects of cancer without treatment. I’ve been trying to find a positive and encouraging way to spin this for my blog, but there simply is no way, so I might as well be honest about it. Each day is faced with chest and abdominal pain. Add to that a higher level of fatigue and regular use of opioid pain medications, and you have all the building blocks of wanting to live in exile. Yup, I know, not the best choice… but fighting cancer isn’t always about fighting the disease. Much of the time it’s about fighting the mind as it struggles to stay friendly with your body!
- The third reason for not writing is simply the withdrawal part. I’m working on a year of dealing with this now, and a good ten months of being out of work and disconnected from my old life and work associates. Disability is plain and simple a lonely experience. When that gets the best of you, it seems so much easier to give up and pull further back, rather than reach out to stay connected. And frequently, reaching out is met with questions like, “How are you feeling…?” or statements like, “You look great…!” Neither conversation can be completed with a short and simple answer, and long replies are just tiring to give. Are you beginning to see why withdrawal appears as the easiest option?
So I’ll use this blog as the long answer.
Medically speaking, my clinical tests and scans show that the cancer is not improving, my primary tumor is larger than when I was first diagnosed, and the blood clots in my leg, chest and lung are persisting. The good news in all of this, is what the doctor in Boston said when he pointed out that nearly every organ in my body has been affected by this disease, but none had failed… which is why everyone remarks on how great I appear for someone with terminal cancer. And yes, it is a blessing looking better than I should instead of worse than I should! I’ll take it.
Emotionally speaking, I won’t try and cover it up. This has been an extremely fatiguing experience. It is a struggle to not give up in the mind. Months ago, I’d head into a treatment, procedure or test and say, “Lord, I know You can get me through this…” Lately I find myself saying instead, “Lord, it’s really okay if you take me now.”
Spiritually speaking, I tell people all the time that recovering is no longer my chief goal. Being at peace with God is. If He wants to heal this body, awesome! If He wants to take me to heaven, awesome! As long as the path is His, I’m good with that, which means I no longer have to plead, bargain, or pretend. I can accept and rest in faith instead of struggle with the outcome.
A lot of people want me to fight on. I remind them again that I do what is reasonable to stay healthy and equip my body for the best it can do. I still pursue everything from herbs, supplements, oils, teas, to organic foods and “cancer fighting” diets. I still get tested for new medical therapies to see if I qualify for anything that looks promising. What I don’t do is fight the reality that pharmaceutical trials are closed to people like me with poor blood counts. (It’s more important to the pharmaceutical companies to prove their drug works, than to prove it works on really sick people.) I don’t fight the reality that there is no chemotherapy (yet) for pancreatic cancer that can cure the disease. I don’t respond to every claim on the internet about a secret cure for cancer that dates back to the pharos of Egypt.
Instead, I am quite comfortable with the truth that 100% of the current population will die someday. I am quite content that I have had a full life as a professional musician, then another full life as a pastor of a dynamic and meaningful church, then another full life working as a support professional for one of the most innovative tech companies in the history of America. I am also totally blessed to have had nearly 30 years with my wife Christy, to see my children make it to adulthood, to welcome my first two grandchildren into the world, and to be at peace with my brother and sister, able to look back on our lives with joy and satisfaction. My life is already quite full and many folks have passed away without coming close to receiving all that God’s given me. Yes, I’d gladly take another 15 years… but I am also quite content if it is God’s will that this year be my last. No complaints.
So that leaves me waiting on that elusive test result to see if I can try immunotherapy, and holding the hand of my Savior. Oh yes, and getting small glimpses of the Appalachian Trail here in PA with Josh and Nicole; and visiting with Anna, Tristan & Madelyn in August; and seeing Sarah later this summer; and being nearby for Aaron; and cleaning up cat throw-up from Banjo (because that’s how he likes to get attention); and resting in our amazing home; and being close to my wife. Honestly, I think I’m in quite good shape here, despite what all my medical records say!
This past weekend Christy and I spent visiting family in Massachusetts. Certainly a highlight of the trip was an afternoon out with my sister doing some lobstering! That’s some hard work, and I can’t believe she goes out most days and hauls hundreds of traps! She earns my admiration.
Spending the afternoon out on the ocean and revisiting the waters I grew up in on Cohasset harbor was such a great break away. It brought back so many happy memories from childhood, swimming at the beach, sailing races outside the harbor, fishing for flounder from the channel markers, and summer after summer of growing up in such an amazing little town! It was a great weekend.
The only frustrating part was that Dana Farber Cancer Center in Boston couldn’t schedule me while we were there and set up their consult for me this Friday. So that means driving back up to Boston, visiting the hospital, staying over, and driving back to PA Saturday morning. It will be tons of traffic on Friday, so hopefully the consult will be worthwhile. It is one of the leading cancer centers in the country. I’ll post an update afterwards with whatever they say. We’re hoping for some new ideas…
Also, my oncologist in Bethlehem decided to do some tests to see if I would qualify for a new branch of immunotherapy. This is a newer treatment that has been working well with melanoma and lung cancer. Two weeks ago, there was a conference and they opened it up for stomach cancer, and also decided to allow some trials with patients with other forms of cancer if their tumors match a specific DNA structure (or something like that). So I’m being tested to see if I’m a match or not. Not sure how long that will take to process.
So there are a few logs in the fire and we’ll wait and see if any produce new options.
Thanks again for your prayers.
So today we met with the oncologist at Dana-Farber. The good news is that our doctor in Bethlehem knew all the options for my condition. Of course that means that one of the best cancer centers in the country confirmed that there really are no other options and that pancreatic cancer is still one of those conditions where medical science is still quite limited. So we press on and wait for test results for immunotherapy…
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.
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.
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.
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!
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.
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!
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.
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.
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!
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.
How important it is to take the time out to build these memories.
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.
As 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!
So 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.
Merci très beaucoup!
I’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!