MSKCC Update

Bud went to Memorial Sloan Kettering last week for scans and reports.

We are grateful to report to you the following:

  1. From the oncologist – everything looks good and and we will keep the three-month check up cycle. Continue with the targeted therapy medicine–no changes at this time.
  2. From the radiation oncologist – things look really good; even evidence of the bone in the spine regrowing. They gave him an osteoporosis shot to help boost that activity of growth. No need to go back to this doctor for six months.

How great to display for you the works of God! We are thankful for the great report and we are humbly thankful for each one of you who is praying for Bud’s health. Whenever you share that you’ve been praying, we are reminded of the wonderful love that God shares with us through His dear children.

Blessings to each one of you. 169632-Max-Lucado-Quote-We-exist-to-exhibit-God-to-display-his-glory-We

Keep Calm . . .

2nd opinionA whirlwind of activity…

We learned on June 7, that there is a bit of new cancer growth on Bud’s spine. The Rochester doctor gave us her plan. Friday, we went to NYC, Memorial Sloan Kettering, for their opinion and plan.

Yes, there is a little bit of new growth, which the radiation oncologist wants to radiate. (Correction: a previous site — the spine — shows additional growth. This is not a “new site.” Sites radiated with “curative doses” of radiation rarely have additional growth. Bud’s original dose was a palliative dose, to alleviate his severe back pain.) He is confident that it can be eradicated without a great deal of risk to the spine, even though that location has been radiated once before. So we will proceed with making plans for a biopsy of that growth and radiating it at the curative dose level.

Earlier in the month, there was some evidence of something unusual happening in the brain. The Rochester doctor believes it is radiation effect and not new cancer. The NYC radiation oncologist also thinks this may be the case. There is a specialized MRI that can tell him for sure. Bud will be having that done on July 2. Given the level of confidence that both doctors have that this is not new cancer, and given how the symptoms have subsided after initiating steroids, we are believing this too unless the coming scan shows otherwise.

And likely, we will stay on the current medication for some time longer. It has a typical “shelf life” of 12 months. It has worked for Bud for about 20 months. (The NYC doctor feels that the new cancer growth is a result of radiation failure, not med failure.) Even if it was med failure, once the location is radiated, then there is no rush to change meds if the activity in his brain is not cancer.

As long as the current medication is working, we are advised to stay with it. Another consideration is that each med has a “shelf life” and we don’t want to start the clock on a new one prematurely.

In this cancer journey, we can see God writing a story and molding lives. Along the way, we think of so many things for which to be thankful. One of the foundational things is advice from a family member early in the process. She encouraged us to go to the best hospital in our region for a second opinion. It was excellent advice two years ago; and it proved to be excellent advice at this crossroad as well.

Originally, Bud thought that we would just go with the advice of our nearby doctors and not incur the expense for second opinions. But it is amazing what different doctors will see, know, and suggest. This was well worth the effort and money involved.

The second opinion infused new hope into our journey, as I’m sure some of you can hopeunderstand. If you don’t already know, “hope” is a powerful word.

Thank you for your continued prayers.

 

being  I am currently on “break” from school. My courses run in eight-week sessions with a two week break between. I had grandiose plans of getting so much done, but today is the last “official” day. And nothing is done.

No laundry, no changing my textbook/study center, no closet cleaning, no swapping out winter clothes, no basement hoeing, no plant planting. No “thing” is done. I didn’t actually hope to accomplish all of that, but I thought I would get to one or two things on the list.

Even though I sound discouraged, because I do like a tidy home and a lovely yard, I am not. All these things will get done when they are supposed to, if they are supposed to. You might be walking up my porch steps as I put away the last pair of underwear or wash that last pan, but “just in time” works. If November comes and I pull a sweater out of the dresser in my bedroom, where it has been for the entire summer and fall, then I’d say I’m ahead of the game.

So if I accomplished none of these “things” — where did my break go?

Two events come to mind. One event was a “must do.” Our lives are made up of those. Not because others dictate to us, but because we understand the importance for ourselves of doing them. This “must do” was attending my uncle’s funeral. Nearly all of us understand the “must do” component — while you want to support your family and be there for the event, the “must” part comes because no one likes facing death. But it is part of our lives and it is a fact of our history.

The other event was only a “must do” in that it was time for us to get away. But this was mostly spontaneous, especially in that we didn’t actually plan where we were going and just decided along the way. We didn’t actually book hotel rooms, either. Well, I guess that’s not so unusual for us. We just “hope” it works out and we might find a deal. My poor kids can tell you how this usually worked when traveling long distances!

So we ended up enjoying four nights and five days of spontaneity. Each night, the hotel room hunt was successful. The capstone night was finding the Common Man Hotel and Restaurant in Claremont, New Hampshire. What a lovely place. And we were offered a discounted rate, besides!

We didn’t have any particular agenda; no schedule to keep; no people to meet. So we drove, relaxed and rested.

But always present was one extra visitor that we didn’t invite. It was “that guy,” Cancer. He’s always with us these days. Though the doctors have indicated he is not active, neither do they say he is gone. And sometimes, we are reminded that he invaded our lives because of treatment side effects.

So in our wanderings, he was there. But because we were able to cut out other stresses, the time together was refreshing and brought us closer together. I recently heard a friend say that she is “living” with cancer — we are still learning how to do that.  It is a challenge to teach yourself to live in the moment; knowing that cancer wants to limit the moments. Our journey has been somewhat calm, so far, compared to others we have known. We are thankful for that and it reminds us to pray for those who face very hard treatments and prognosis. Our long weekend resulted in some much needed rest, introspection, conversation and rejuvenation.

So those things that I thought I’d get done during break don’t matter. Life isn’t about “things” — it is about moments. Our wonderful, happy, spontaneous moments this past week — that was living.

Here’s what we got to do!
Friday morning – rescheduled MRI in Rochester;
Friday night – Syracuse (NY) Mets ball game – Tim Tebow at bat x3 ;
https://www.milb.com/syracuse

Saturday morning – breakfast in Syracuse with Titus and Abigail  
http://www.thegemdiner.com/menu/ – “World Famous” Gem Diner;

From here I thought we were going to Boston, but the traffic dissuaded us.

Saturday afternoon – stopped in to see Bud’s Dad;
Saturday night – Dinner at Lizzie Keays (Bud’s sister’s restaurant in Warrensburg, NY)
http://www.lizziekeays.com/

Visit with friends in Thurman, NY;
Sunday morning – church at New Hope Church – Queensbury, NY;
http://www.sharingnewhope.org/ — excellent place to worship!
Sunday – Lunch with Bud’s Dad – Bud’s locally famous spaghetti;
Sunday afternoon – Andover, VT;
Sunday night — The Common Man Inn and Restaurant in New Hampshire
https://thecmaninn.com/ – a must do for you!;

Monday – Andover, New Hampshire
AND Andover, Maine
Had a great late lunch here:
https://www.facebook.com/AndoverGeneralStoreandDiner/;
Tuesday – Joshua Chamberlain Museum in Brunswick, Maine – Bud’s “History fix” – a bit of history about a Civil War general.
http://pejepscothistorical.org/chamberlain

and Home!

Aware

HCHaSo, here we are at the second Christmas since Bud’s cancer diagnosis.

I think that the word that comes to mind for me now is “aware.” I am a bit more aware of the goodness of the Lord. I am also a bit more attuned to seeing that goodness around me.

Even before the diagnosis, when things seemed huge in our lives it seemed to be my “go to” statement — “God hasn’t brought us this far to just leave us stranded.”

Side note confessional: Okay, so the truth is I actually say “God hasn’t brought us this far to just drop us in a hole.” The first sentence sounded more socially acceptable. The second demonstrates the depth of the anxiety that was involved.

The main point is that usually it took a “huge event” to cause me to state my trust in the goodness of God. As I look at things as they are today, I see how many holes He has drawn us around, eliminated, or bridged over for us. And I understand more fully that each day is fraught with holes. The unfortunate thing is that I allow myself to think that I can handle those “every day holes.” I easily forget that without God, I would plummet every time.

Bud’s medical status is great. All of the locations have been radiated and the scans (as of this week) show no active cancer in these sites and no new cancer anywhere in his body. As a result of a trip to Sloan Kettering in August, an adjustment was made to his medication dosage that has eliminated the vast majority of the side effects of the treatment. He is feeling great and has good energy. We’re back to the lifestyle where I have a hard time keeping up with him.

I want to remember to remember the goodness of God. I want to see it every day and to be aware of it at all times. When I plummet into a hole, for certainly I will, I want the grace of God to draw me out of it and to bridge it over for me and I want to recognize His goodness even then.

God is good, of course all the time. I want to be aware of it, all the time.

 

Who Holds the Future

Last week was another progress check week.

Bud had his scans on Tuesday and results appointment on Thursday. The doctor indicated that the scans show NOTHING NEW IS HAPPENING! We are so thankful again and again.

Those of you who have to have regular scans, know what a roller coaster that can be with your emotions; and I’ve even written about that before. But in all of that we never want to lose sight of sharing our gratitude about how God is working in this situation. He is always with us and is ever there to comfort and guide us. Should the news ever come back in a disappointing direction, this truth remains: He will never leave us nor forsake us.

As we remember where our path was just one year ago, the difference is so amazing. We had so few answers and were given such little hope. And even then, God was with us with His special comfort that doesn’t make sense to this world.

Bud tackles every day with energy and enthusiasm. He is able to to everything that he was before the symptoms appeared. Projects are on track–well, as on track as an easily distracted person keeps them. He is not hindered in serving families at the funeral home.

Thank you for your prayers through this process. We don’t know what the future holds, but we know Him who holds the future. And He is entirely trustworthy.

IMG_20181023_165244400

Double rainbow – SR 21 to Hornell 10/23/2018

 

Following Hope

For most of June, Bud and I spent our time in New York City.

The purpose of our visit was to obtain radiation treatments on the tumor in his lung. How did we arrive at this decision?

In May, the side effects of the clinical trial would not diminish within the protocol’s stated timeframe so the doctors removed him from the trial. At that point he continued with the “targeted therapy” drug according to the plan. However, way back in October we had gone to Sloan Kettering to obtain a second opinion on our treatment plan. During our visit with Dr. Wu, Bud asked him at what point we should consider radiating the tumor.

Dr. Wu advised us to go on the clinical trial and stay with it as long as there was progress. At such a time that the clinical trial was no longer a good option, then he would suggest radiating the tumor as well as any other sites that had not previously been radiated. On Tuesday, May xx Bud called Dr. Wu once again to see if he thought this would be the time to implement that advice from October. Dr. Wu called back immediately. By Friday we had an appointment to start the preparation for a simulation that would lay the groundwork for treatment.

Simultaneously we were working with the doctor in Rochester, asking all the same questions and seeking his advice as well. In all of the conversations and appointments a great deal of information was given out and at times it seemed very confusing. We saw clearly how practical it would be to get treatment in Rochester and the idea of doing this in NYC was overwhelming, primarily for me. We didn’t have a clear direction.

Finally, during a conversation with Dr. Wu Bud asked him the exact question that he posed to the doctor in Rochester. “What is the goal in radiating according to your plan?”

I will put both answers side-by-side:

Rochester: The goal is to get as much of the cancer as possible without hurting you. The idea is to get you as much time as possible.

Dr. Wu: I believe we can get all of the cancer. And the goal is to have you cancer-free, at least for a long time.

God does make the path clear when you ask Him to. Given those choices, Bud was drawn to the response that offered hope.

So, that response began the whirlwind lifestyle that characterized most of our June. Bud had the simulation done and went through 15 treatments. We were told that he could expect to feel some discomfort in his throat area and may become fatigued, but that hasn’t happened. The first set of progress scans will be in the two-three months after the last treatment. In the meantime, Bud has resumed the “targeted therapy” drug.

Throughout this process, we have been blessed with your prayers and best wishes. And we are especially thankful to our church family for addressing our lodging issues in New York. God has been apparent through the entire month, leading and helping us through all things.

Bud often says “I don’t want to get ahead of God’s story . . .” This journey truly is God’s story and we don’t know what He has in store for the ending. It has never been Bud’s goal to cling to life against God’s plan. (There’s an interesting Bible account about that which he’d be glad to share with you!) But it has been his goal to “press on.” He presses on doing those things that God wants him to do; and he sets his sights toward that “prize” which is not to be found in this world, but in heaven.

That said, we invite you to continue to watch and see what the Lord will do!

There is the miracle

This is a modest edit of my May 5, 2018 posting to “Mercies in Disguise”

The scans show that there is no growth of the existing (lung) lesion! And no new growth! Both answers to prayer.

Bud has been off the protocol for 26 days and they have been waiting for the side effects to clear up in order to re-start. However, they were not satisfied that the side effects had subsided sufficiently and determined that he is not ready to start the protocol again. Since he can only be off for 28 days, that decision essentially removed him from the clinical trial.

He will now begin the treatment that he would have taken in November, had a clinical trial not be available.

Our status reports will now be every 12 weeks.

Bud and I have been through at least one catastrophic event in our lives (two if you count the day of the cancer diagnosis.) When Caleb died of SIDS in 1987, that was a catastrophe such as I had never imagined. The emotions were overwhelming; time was forever marked by that day. But the thing about a catastrophe is that it happens and immediately thereafter, the healing begins. The event keeps your mind preoccupied for a time, but a new normal settles in and you begin to adjust to the reality that you now have.

I have pondered the contrast of catastrophic events and chronic events since that time. One is called on to pull out different resources to manage each. Many of us have had at least one time of wondering how we would handle some type of tragedy. Perhaps we’ve tried to stand in some else’s shoes and walked ourselves through how we would like to handle a certain type of event. I know that when I heard of people dying, I always hoped that I would have the spiritual fortitude to look to God for my comfort and to praise Him through the storm that had overtaken.

But at some point I started thinking about the chronic events of life and wondering how I would handle those. Years ago, we had a friend who suffered from Chronic Fatigue Syndrome. He had a wife and one child at the time. Consider how little is currently known about this disease and then think how frustrating it would have been 25 years ago. But his wife was a woman of strength and dedication. When I think of my early examples of how to handle chronic issues, this couple comes to mind.

As I’ve considered them, I see how the catastrophe in our history perhaps prepared us for the chronic event before us. I believe that God used many details in the death of Caleb to touch others and to grow us. I believe that we have honored God in our representation of this event and in how we responded. It was a huge, huge event; I just cannot describe or tell all that happened.

And now, we are on the cusp of a chronic event. Yes, I agree that the initial diagnosis felt more like a catastrophe. But it hasn’t gone away and now we have to manage our lives around that intruder, cancer. The little beast is on our minds day after day preying upon our peace. We have no answers or conclusions, we have no point in time where we can “settle in” for a new normal. The reality is always changing.

We respond differently to chronic than we do to catastrophic. What do we do when there is a catastrophe in the family of a friend? It is so easy to be there for them and to support them. And it is so easy for them to let us, because it will level out soon. They understand the significance of the catastrophe and often they are depending upon God and shining His light and His love through the event.

Contrast that to how we respond when our friends, once again, need support in the same “old” trial. It feels heavy, doesn’t it? It feels like things are never going to change or get better — and that second part is really what we want — that it would get better. And, it’s difficult for them to keep accepting help. They know that in some way, they are disrupting our lives; that they are taking our precious time and maybe even some resources. They may have to pray more frequently about their attitude or they may be so discouraged that praying is hard.

Chronic is defined as an illness “persisting for a long time or constantly recurring.” (Google Dictionary) I don’t know what is classified as a “long time” but as I look at lung cancer, perhaps this is a chronic event for us. People may look at our blog or Facebook page looking for updates, but with a chronic situation, updates are sparse and usually uneventful. So what would I like for you to know about us and how we are handling our chronic illness?

We have to pray more frequently about our attitude. God is a comforter and healer and we know this. We know that He can fully heal Bud at any moment. And what praise we would offer to Him at that point! But sometimes, it is not about the miraculous thing that God could perform. Sometimes it is about the continual work that He is doing. He is continually comforting. He is continually communing with us. He is continually adjusting our attitudes. He is continually meeting our needs. Perhaps that is the miraculous; that He never grows tired of our situation and that He is bigger than the evil one who wants to pull us down.

I know that there are those of you who struggle with chronic illness or chronic obstacles such as addiction, family problems, emotional issues, or any number of things. We know that God could instantly remove all of those diseases or problems. Not since Jesus walked the earth has there been widespread healing. While there is healing today, still, and I do believe that, the normal course is to deal with the chronic event day by day.

And where is the miracle in that? The miracle is that He never leaves us; nor does Hemiracle-tree forsake us. The miracle is that He has given us His Comforter to come along side us and help us in all our situations. The miracle is that He loves us and provides for us each and every day. The miracle is the love of our brothers and sisters who reach out to us and who pray for us and help us. Have you stopped seeing the miracles in the chronic? The miracle is that He can adjust our eyes to see things the way that He does. The miracle is that we can daily depend upon Him and not be disappointed. The miracle is that He draws us ever closer to Him.

I pray that as I walk through this chronic event, that I will look for the miracles. If God were not with me, there would be no comfort, no help, no provision, no prayer, and only disappointment. In embracing the Him, there is the miracle.

Privileged to Witness

Wednesday, I posted information about Bud’s CT Scan in the Facebook page, Mercies in Disguise:

Bud had a CT Scan yesterday, which will act as a baseline for the clinical trial. Dr. indicates that there has been no visible change in the tumor in his lung — stable for two months. This is a praise that it has not grown.

Randomization was completed. Bud is in the more aggressive protocol! Also a praise. Drug therapy starts on Friday.”

Praying for something fervently requires transparency. Asking for a myriad of friends to pray for something also requires transparency … and vulnerability.

When you put something out there that you want really badly, you are opening yourself up to evaluation and opinion. You’re also opening yourself up for the world to watch your response.

But more importantly, you are opening yourself up to God. He is a good Father and the Good Shepherd. We have our desires and He Invites us to ask; He wants us to pray believing that He is able. So we prayed continually to be in the more aggressive arm of the clinical trial knowing that He is able to put Bud’s name there. They called it “randomization.” But God doesn’t do random. His plan is specific and detailed. I am so thankful that I do not serve the god of random. That would be a belief system of utter chaos.

But what if Bud had not gotten the more aggressive group? That was a question we had to address as well. Even when you pray knowing that God is able, that does not mean that God will. And then you have to look at the emotions that could arise from that knowledge… perhaps disappointment? We certainly did not want to be disappointed by God and His choice. We know that God’s decisions for us are the best ones. And we absolutely did not want to be disappointed in God.

As we told God what we wanted, with our limited understanding, we also gave it over to His will. After all only He knows if it is a good thing for Bud to undergo the more rigorous plan. It seems like a good approach, but what if the two drugs working together do more harm than good? What if his body has a reaction to the infusion and creates immediate life threatening conditions? These were questions to which only God would know the answer.

But God’s plan was to give Bud the desire that he had voiced so frequently. I was there when the doctor called him. As Bud was listening, suddenly I realized that he was crying. He had just heard the doctor say that he was going into the second, two-drug group of the clinical trial. His body crumpled in gratitude and humility. It was a sacred moment between him and God that I was privileged to witness. As he came to the throne in surrender and thankfulness, there was no disappointment, only total delight in the gift of a loving Father.


On Friday, we went to Wilmot Cancer Center to receive the pill (afatinib) and instructions. The part that I did not understand is that Bud would also get his first infusion the same day! He spent about four hours hooked to the IV to get the infusion. We img_20171117_124133734.jpgwere on our way home by 5:30.

 

November 7 was the last radiation treatment. They said that in ten days to two weeks, he will hit a wall of fatigue. That happened today. He has spent nearly all of today just resting.

 

Rest

Bud has had three radiation days. These included radiating the two spots on his brain and the spot on his spine. He has two spine treatments left. And he has signed up for the clinical trial. Next week we will find out which group of the trial he gets. And on November 17, he will start the treatment; this will give plenty of time for the radiation to leave his body so that it will not interfere with the drugs.

So much has transpired in so few days. I feel like I’ve been through a year’s worth of living. Today I did not go with Bud for his radiation. It seemed like I need some rest.

Bud and I have been reading Max Lucado’s book, “Traveling Light” together. It is a book about Psalm 23. I am reminded of how the path that the sheep take is carefully prepared by a good shepherd. He does not let them travel down questionable or unknown roads. He is there with them, making the way for them. He offers them safe rest in green pastures and beside quiet waters. But he has first located these pastures and made them ready. He has first scouted out the water supply to assure that it is plentiful and calm. He has gone before them.

God always goes before us. He is not taken by surprise by a suddenly steep or daunting path. He has already been there. And He knows how to get us through. He is not unaware of the waterfall nearby; but He knows that the path opens to a wide field with a serene pool. And He places himself between us and the rushing water. He is fully engaged in our care. In all of the circumstances of life, He has gone ahead of us and He has made a way for us.

God’s care does not rely on optimal circumstances. Our rest does not depend on everything being just right. Our rest comes because of God’s diligent work on our behalf. He is always between us and the danger. His great love for us is manifest every day. That we are able to rest at all is evidence of God’s hand of provision and protection. Rest is good; every good gift comes from God.

So, today, I take that rest. I choose to rest in His great love. I believe that He has gone before me and He knows where He is taking me. His great love will bring me safely through the circumstances ahead of me, circumstances great and small.

quiet water

Sloan Kettering

Our visit last week with Dr. Wu was another of those God-moments.

We drove to NYC and entered a different world. Navigating that city is a resume-worthy skill! There are so many people; there is so much activity; their leisurely pace is “fast.” It was just . . . other worldly.

Things slowed significantly after we stepped off the fourth four elevator at Sloan Kettering Memorial Hospital. Noise subsided to nearly nothing, except the honking of horns below us and children playing in the school “yard” across the street. Once we were shown to a patient room, the quiet totally enveloped us and it was welcome.

Once again, God knew what was needed to give us peace in His plan. Dr. Wu is a humble soul who shared with us his expertise, knowledge, and opinions. He answered many questions and answered them well. At one point in the conversation, Bud began to talk about his relationship with God and his hope of heaven. Dr. Wu asked him to clarify something and then simply smiled. “Amen,” he said “I’m a Christian, too.”

And the relationship changed. Instantly we felt an understanding with Dr. Wu. Instantly we felt even more confident in his information as the Holy Spirit confirmed His presence. Dr. Wu did not give us an unrealistic view of the situation. However, he did indicate that he is hopeful for more time than we have thus far been told with regard to this strain of lung cancer.

He said that the timelines that the UR is working with (and other hospitals as well) looks backward on the old data and the old (chemotherapy) treatment. The study of this particular lung cancer (non-small cell adenocarcinoma, EGFR positive) is just emerging, as in about ten years. Dr. Wu indicated that the statistics have not been able to fully write in results of the new targeted drug therapy. And they don’t take into account that the drug therapy is now in the third generation of drugs. He is seeing great success with the drug therapy and is hopeful . . ..

Dr. Wu has confidence in the UR plan and the clinical trial. He indicated that even if Bud doesn’t get the more aggressive arm, that this study is a good thing. Getting the less aggressive arm will still allow Bud the standard of care treatment, which is the treatment that Dr. Wu described as “hopeful.” And being in the study will allow the collection of data to improve the possibilities in future treatments.

So, Dr. Wu was an encouragement about the possibilities. Once again, God placed a relative on our path to encourage and inform. God is good, all the time.

love one another