mrskeithgreen-blog

[mrskeithgreen-blog]

There is hope…

After 3 rounds of immunotherapy infusions, we weren’t sure what to expect.  For the most part, little has changed and Keith is tolerating the treatments well.  Much better than the chemotherapy for sure.  No hair loss, no mouth sores, no weakness, no loss of appetite, no crashes.  He is able to live a “normal” day to day life.

The doctor had prepped us before the scans by telling us not to get our hopes up because after 3 treatments, there may not be much to go by.  It won’t be until after the 6th treatment that we should be able to know whether or not the immunotherapy is working.  He doesn’t know that hope is what gets us through every day.  Hope is what defines us and keeps us going through this storm without getting down.  We always have our hopes up!

When the doctor came in the room to tell us the results, I have to admit that despite the warnings and knowledge I found myself holding my breath.  Finally, Keith said, “well…?” The doctor said, “nothing too exciting.” Keith said, “well that’s exciting to us!  What is exciting for a surgeon and what is exciting for a patient are obviously opposite!”

The doctor pulled up the scan from Friday along side the one from right after surgery in November and pointed out that the area along the membrane where he removed the latest tumors had some new growth.  We already knew that was going to be the case.  The rest of the brain is clear so that is great news! The area along the membrane is “easy” to remove and he even said he could go back in a few more times with no problem.  We’d rather not, but having it as an option is always a plus.  

There is no way to know at this point if the growth is all cancer cells or if it is cancer cells being attacked by the immunotherapy.  He said that sometimes at this point, it can look like a lot of growth but in reality, the cells look bigger because they are eating up the immunotherapy which is killing the cancer.  I was happy to hear that because it gives me something specific to pray for and it also gives us hope that it is working and they are going to continue to give the immunotherapy for the next 3 rounds.  

We will go back in the beginning of May to compare and try to make a decision on whether or not this is working and if he will continue to receive treatments or if we will talk about going another route.  So for now, we are staying course and living each day to the fullest!

[mrskeithgreen-blog]

The start of something new…

It has been so long since I updated this that I had to look back to see where I had left off. We had a very busy Christmas, the whole month of December actually with both Sarah and Zoe turning 11, and as much as I love the Christmas season, I am glad to be on the other side.  I know I do it to myself and create more traditions and things than are necessary but I love to make people happy.  It is who I have been my entire life.  Keith jokes that God knew all along that he was going to need a caregiver so I was sent into his life.  I often bite off more than I can chew and I have to tell myself it’s ok if everyone at the part doesn’t get a handmade ornament or knitted hat or whatever my project is that year.  I also take a lot of care in paying attention to people and making mental notes during conversations about what would be a great gift for them.  

Well, this year I didn’t even get our Christmas cards out.  I also didn’t hang half of the ornaments on the Christmas tree and I decided that our friend party was going to be pajama themed so we didn’t have to fuss about what to wear.  What seemed as failures at the time actually created a less stressful, picture perfect time that allowed us to relax a little more and focus on quality time.  

Right before Christmas, my Aunt Dar passed away and left a huge hole in our family.  She was such an amazingly kind soul that could light up any room and always made Keith feel like he had always been part of our family. The words spoken by those closest to her at the funeral sparked something in us and we have not stopped talking since.  Walking out, Keith looked at me and said, “our kids don’t see us that way, we have to do better and be better.” We have been talking and praying about how to live outwardly what we feel inwardly.  That is kind of hard to put into words but I think the reason behind my strategic gift giving and memory making is to make sure my loved ones know that I listen and care. But we can always do better and inspire others to do better as well.  A few short weeks after losing her, my grandpa suddenly passed away.  I always knew what a quiet, amazingly supportive man he was, but why do we wait until someone dies to take the time to learn things about them?  I never knew what he did for a living, or that my grandparents married while still in high school, or that he adored Keith and was so happy that I had found happiness. We rush through life without taking the time to listen and ask questions about the important things.  There’s so much more to learn from our elders.  I love listening to my grandma tell stories. She always says I’m sure these stories bore you! Are you kidding me? I love it! I need to start writing them down though because my memory isn’t what it used to be.

So, at the beginning of December Keith received his first immunotherapy infusion which is a very similar process to receiving chemotherapy, we even go to the same department and sit in the same chairs.  They hook up the IV and then wait for the meds to finish.  Unlike chemotherapy, he did not experience any of the nausea, weakness, loss of taste or the other hundred side effects.  He was a little more tired than usual for about a week or so after but otherwise tolerated it very well.  After the first week, he started getting some major visual changes that started out as what he calls “seeing stars” and developed into a complete visual field deficit.  He couldn’t see anything clearly and after a few days of him trying to convince me he was “fine” I insisted that we go to the ER.  The episodes were lasting longer and longer and I didn’t feel safe leaving him home alone ever in case it was seizures or something life threatening. In the ER, the screened for seizures and determined it was likely increased swelling in the brain due to coming off of the steroids.  He had been on steroids for over a month because of the surgery but when he was told that in order to start immunotherapy, he had to be off steroids, he tapered very quickly.  Too quickly according to the neuro team.  He refused to go back on the steroids for fear that it would make the immunotherapy less effective.  I was at a loss, I know he needs the immunotherapy, as he says it’s his last shot, but at the same time he can’t function if he can’t see.  After going home, the episodes continued to worsen and after talking to the doctor, he was forced to go back on the steroids.  He saw this as a setback, but they told him prolonged swelling on the brain is more damaging so it has to get under control. Within a few hours he was back to “normal” whatever that is anymore.

Just before he was to receive his second infusion, he was doing something in the basement and felt a pop in his shoulder.  Within a few hours, his entire arm had turned purple, was swelling up and all of the veins from his chest down to fingers were bulging.  He assured me it was just a pulled muscle and not to worry about it. A few days later when we saw the doctors, I mentioned it and asked to have it looked at.  He immediately shot me a look and said he’s fine.  He was worried they wouldn’t let him have the infusion if they thought it was a reaction to the meds.  They looked at it and didn’t seem concerned.  They were however concerned with him getting back on the steroids and the dose he was at to control the swelling is too high to receive the immunotherapy drugs.  It would essentially be a wash.  Steroids suppress the immune system while immunotherapy drugs boost the immune system. He promised he would do what he had to do to get down to the acceptable level since he didn’t want to be on them in the first place!  He sweet talked them into giving him the infusion, after all there really isn’t a protocol for him and after all of the research we have done, we knew the risks and were willing to take them in order to stay on track.  

The third infusion was this past week and when the other nurse practitioner came in the room, I may have mentioned the purple arm against the looks of my husband.  She immediately said it needed to be looked at. It was going on 5 weeks and there was no improvement.  She was willing to allow the infusion and send us to the cardiovascular center immediately after.  While doing an ultrasound of the area he claims was a pulled muscle, they discovered a six-inch-long vein in his shoulder that was completely blocked.  I had never heard of a six-inch-long blood clot! My mind started racing and I told him i am not taking you home until that thing is out. I have watched too many episodes of Grey’s Anatomy to know what happens when a blood clot travels to the heart and lungs. But seriously, I wasn’t prepared for them to just say he was going to be prescribed blood thinners and was going home.  I really thought they would scope in there and remove it! Instead, the nurse came in to show me how to give him injections twice a day until this clot is gone and then they said he would go down to once a day for the rest of his life.  If you know my husband, you know this wasn’t going to fly.  As soon as we got in the car he said, well I’m not doing that for the rest of my life.  I was so frustrated I couldn’t speak.  Apparently, cancer patients are more prone to blood clots than the rest of us so it’s not uncommon to be on a blood thinner.  I calmly said maybe there would be an oral one to switch to once this clot is gone and please stop with all of the stubborn “I’m not going to…”

I have heard the saying that if a man had to give birth, we would be extinct and I am starting to see why. Granted he now bruises like crazy and has very thin skin, but when he tells someone about this injection, you imagine the 12-inch needle they used when I had an amniocentesis.  Nobody likes to get poked, but the needle is very tiny and it’s over very quickly.  He has gotten used to the actual poke but says the burning that comes a few seconds after the medicine distributes is so bad, he would rather go back to brain surgery.  Not funny, but in our house, we make bad jokes like, “you act like it’s brain surgery” all the time which seems to lighten our day.  The doctors say is could take months for this large of a clot to dissolve so the injections aren’t going away any time soon.  

In the meantime, we have decided to start a non-profit foundation to help others find hope in otherwise dark times by seeing the love of God all around.  We hope that this foundation will bring awareness to others that helping someone and praying for them and helping them see God can change their outlook on not only their situation, but in life.  We have so often been asked how we stay so positive, and optimistic with such a grim diagnosis?  It hasn’t really occurred to us to be any other way, so we didn’t realize the power that has.  If we can help at least one person to go from feeling hopeless and down to having hope and a light in their day then perhaps this is our purpose for all of this and it will be worth it.  

Next week will be a scan of the brain to see where we are compared to November right after surgery. They forewarned us that after only 3 treatments, we may not see much but hopefully after 6 we will get a better idea of whether or not it is working.  Any time you have a test or scan it is impossible to stay completely calm. We know in our hearts that it is what it is and we will continue on this path until we are told there is nothing more they can do.  As of today, he continues to work every day, he goes to the kids sporting events, we have been out to several charity fundraisers the past few weeks and although he tires out easily and has a hard time navigating through crowds, he never gets discouraged.  

So this crazy life of raising five kids, owning a business, starting a foundation, and surviving cancer will continue.  One day at a time.  I just recently saw a quote I’d like to share.  It goes something like this...”People say you only live once, but actually you only die once, you live every day.” I will add that since only God knows what day is our last, why don’t we live with more purpose as if today is our last?

[mrskeithgreen-blog]

Let’s Make History

After another very long, mentally overwhelming day in Ann Arbor we finally have the plan that we have been so patiently waiting for.  Keith has been approved for immunotherapy!  This is so exciting for us, I know we need to get out more right?! Two years ago, this drug he will be on was only in clinical trial stages and now it is approved by the FDA to be administered as the physicians see fit. I will admit I was a little uneasy all morning preparing for this visit.  This is the same team of doctors that two years ago told us to go home and update the advance directive and get our affairs in order because this was incurable.  I feel as though we have come so far in the last two years and to hear something so negative once again was not going to be taken lightly.  

When the surgical team mentioned that he is only able to buy us time until the medical side comes up with a cure, perhaps this is what we have been waiting for.  The Lord has certainly been teaching us patience among so many other things!

In the past few years, Keith and I have done a lot of research on our own to learn everything we can about his particular disease. When we were first told there are no statistics or protocols for you, I didn’t quite understand what that meant. What that appears to have meant is that with millions of articles and medical journals on the internet we have not found one study that matches our scenario. In our little bubble of a world, it feels like being the first person to walk on the moon, but not quite as cool. Keith once said couldn’t I be the first one to do something else? Why does it have to be this? He said it jokingly but I understand the point.  We finally found an article two nights ago written in June of this year which discussed his classification of cancer; Head and Neck Squamous Cell Carcinoma that had metastasized to other areas of the body, specifically the brain.  Less than 1% of this rapidly growing cancer has metastasized to the brain, and none of the cases mentioned matched him specifically. The journal further said that genetic sequencing to identify the mutations which could narrow down a treatment such as immunotherapy is possible but much research is needed.  How can you do research on so few people?  But the simple acknowledgement that his cancer can metastasize is huge.  We have been told by so many doctors that this just doesn’t happen!  We were asked today by a new group of doctors to be part of a study that would allow Keith’s entire chart to be used by researchers around the world to compare to any potentially similar patients and identify which treatments have worked and where there could be improvements as well as how he has tolerated and responded to each treatment.  This could be huge when/if anyone else ends up in this same diagnosis; at least they could have one person to compare to!

So back to today, we were once again told that there are no patients past or present at U of M or anywhere, they have been able to find in his shoes.  So how does Keith respond?  “Then let’s make history!” The doctor told us today that although there is much to learn about immunotherapy and the overall success rate isn’t very high-about 17% right now, he is very optimistic about it working in Keith.  First of all, the bulk of the tumor was just removed during surgery which leaves only the few stray microscopic cells behind that need to be treated.  Secondly, the genetic sequencing showed a large amount of mutations, meaning the cancer cells have mutated so far from his original DNA that the immune system should not have a hard time identifying which cells are cancer with the help of the immunotherapy drugs.  Thirdly, aside from the cancer, he is very healthy and able to withstand the longevity of treatments.  

So, starting next week he will begin a new regimen of infusion every four weeks.  The infusion is similar to chemo in that he will have his blood drawn prior to each one to check his organ function and blood cell counts, etc. and then sit through the IV infusion of the drug.  Chemo was once a week and this one is once a month, so that is much better!  He will be re-scanned after three treatments to see if there is any progressed disease.  We do not know how long this will go on for, but for now we expect at least two cycles which will be six months before making an assumption as to whether or not it was effective.  Of course, the side effects they warn you about sound very scary, but in most people, it is tolerated much better than chemo which was not kind to him so that is very positive.  He will likely just be tired for a while which we can handle.  He should still be able to work every day and do normal everyday activities.

[mrskeithgreen-blog]

Faith, hope, love

     I have been struggling with the words and thoughts to share for the past few days.  So many things have been going through my mind as we prepare for the next chapter in what seems like the longest, sad Hallmark movie ever written (and I love Hallmark movies).  I guess that is the word I’m looking for…sad.

    For anyone that truly knows us, you know that Keith is the more emotional one of us.  That is one of the amazing qualities he got from his dad who mirrors Keith in so many ways with his strength and fight against cancer and genuine love for his family. I think my way of dealing with the emotional stuff is to keep busy.  Keeping busy with work, kids, house, dogs, party planning, doctor’s appointments, crafting, you name it keeps me from feeling the weight of the world.  Keith is really good at ‘giving it to God’ and reminds me often to do the same.  My strong happy exterior is necessary to keep myself and my family going.  I so rarely cry around the kids that when they do see it, they get more scared than when I yell, which is also pretty rare.  These last few days I think I have gone through every emotion several times and I’m probably not done.  Thankfully it seems when one of us is down the other one of us is up and can pull us out of our funk.

     A few days ago, we got a call after hours from the neurosurgeon wanting to give us the latest MRI results.  You know when the surgeon calls you personally after normal clinic hours it’s not going to be good.  The surgeon we’ve had for the past 2 surgeries is a young, soft spoken, gentle man who always asks about our 5 kids and seems in awe with our family and has a genuine care in helping us.  So, he began talking about the latest scans and that there were definitely some more damaged areas from the last set of radiation treatments but there was also new cancer growth along the main ventricle of the brain in a tricky cluster. Because of the location of the new cells it will not be possible to remove all of the cancerous cells but he feels confident that he can go back in to remove some of the dead tissue from radiation and relieve some of the building pressure he feels every day as well as the bulk of the new cancerous growth.  That said, since this will not remove all of the cancer, we need some other form of treatment to come in after surgery to kill the cancer left behind. Normally this would come in the form of chemo, but the brain is so cool that it blocks chemo drugs from entering into the tissues.  That leaves immunotherapy or some other type of alternative treatment.

         Since there are no other patients that have lived to see this point, there is not much going on in the way of studies to track what works.  The doctors are very fascinated and have started a genetic sequencing to try to find the mutation in the genes and to see if that could provide any guidance as to the direction to take in the treatment following surgery.  So, what we know right now is that surgery will take place on November 6th and that he will start some type of follow up treatment soon after.  We are praying for a successful surgery and the ability to reduce the swelling and pressure from the dead brain tissue and the removal of as much cancerous tissue as safely possible.  

     Keith said it best yesterday when I mentioned what a great weekend we had together and noted that while we spend almost 24/7 with each other we don’t get sick of one another.  He said well most people don’t have the outlook on life that we do.  In the past 3 years we have had so many critical moments that most couples don’t experience in a lifetime.  Those moments have created a bond that no words can describe. Hope keeps us moving forward, love keeps us together, and faith makes is possible.

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Look for the blessings

Our last entry was so long ago I had to look back to see what I even wrote about!  Since then, we got Taylor off to college and she is absolutely loving college life! We are so proud of her for all that she has accomplished already and know she will continue to grow.  She joined a sorority and is super excited about being a part of Chi Omega and helping to make a special child’s wish come true through the Make a Wish Foundation her sorority has partnered with.  She has also joined a local bible study group and is getting involved in the local community. We miss her like crazy but also know she was born for greatness and she’s on her way to great things!

The other 4 kids have started school, so we now have one in high school, two in middle school, and one left in elementary for one more year.  Sports and activities are officially 7 days a week and keep us on our toes!  We enjoy every minute of watching them play.  I have put more miles on our vehicles than I could have ever thought possible but try to use that time to have important conversations with the kids and enjoy that time.  Thankfully we have the WiFi package in the cars so the kids can do their homework and Keith can work in our mobile office as we often call it.  Whatever works right!?!?!?

Right before school started Keith had a brain MRI that showed the expected swelling and ‘enhancement’ that they expected.  Have I mentioned that I dislike that word??  He was able to get off all steroids and medications pertaining to the brain and surgery in July but has since developed severe pain in his legs and feet that no doctor can explain.  Keith’s words…”being the poster child isn’t always a good thing, lol!” Being the only person alive with his type of cancer metastasized so many times is an incredible miracle in and of itself.  The down side is that everything is explainable and they don’t know how to treat him.  We are waiting on an appointment with the rheumatologist to see if they can come up with anything. We are grasping as straws and trying all kinds of pain relief pills, creams, oils, you name it.  When he gets up in the morning he walks like a 90 year old man walking on hot coals.  If he sits or lays down for more than 10 minutes it starts all over again. Walking any length of distance is very difficult.  Because of this he sometimes feels unbalanced and in conjunction with the majority of his vision being gone, navigating in tight spaces or in crowds of people is tough. I just hold his arm or hand on the right side and joke that I’m his leader dog as well as the family Uber driver.

The last MRI also showed a small unexplained dense area in the brain. Because he wasn’t having any threatening symptoms other than the occasional thumping, tunnel vision, and headaches they decided to repeat the scan in 2 months.    He has maxed out with brain radiation and the surgeon says while in theory you can keep going into the brain surgically, each time poses a multitude of risks so unless there is no other choice he will be hesitant to repeat surgery.  This brings up the brain MRI at the end of this month.  Also, this week will be the PET scan on the rest of the body to make sure we aren’t also dealing with metastases to any other areas of the body.  So, within the next 4 weeks we should know the condition of his entire body!  We actually look forward to these scans which probably sounds weird but there is a sense of relief to the known rather than unknown.

               He is amazingly well adapted to this new body and baseline reality.  He gets up first every morning to let the dogs out-yes we rescued another dog-and get the kids started on breakfast and makes their lunches every morning.  Then once I leave to drive them all to school, he gets on his computer and works.  Some nights he is still working at 9:30 when I get home from the last pickup of sports.  We have an awesome staff in place that does a great job taking over on the occasional day he needs a break but we are so very blessed to have surrounded ourselves with friends and family that allow us to keep living day to day thanking God every morning and every evening for giving us another day together.  I can safely say we don’t take anything for granted and we look for every opportunity to create memories with our family.  We are taking Sarah and Zoe to their first concert tonight.  Their go to music is always contemporary Christian and Mercy Me is one of their favorite bands so we surprised them with tickets and dinner.  

               There are so many ways one can describe what they view as a blessing or being blessed.  It is often a word misused.  The girls the other day mentioned when someone sneezes, why do we say bless you? If you truly pray for someone to receive blessings or to be blessed why associate it with a sneeze? We are blessed by God in so many ways and it is up to us to see those blessings and rejoice in them.  Ho easy it is to complain about having to clean out the refrigerator- my least favorite job-but how blessed I am to have it full of food and especially the extra being thrown away upon fridge cleaning day.  This view of cherishing life’s little blessings is something I have not always done and something I am trying to make sure our children see and do as well. I challenge anyone reading this to capture every negative thought and find the blessing in that situation for just one day.  This pile of laundry that is not folding itself is a blessing that we have a large family and enough clothes to keep them warm on these crazy Michigan mornings…have a blessed week!

[mrskeithgreen-blog]

Back to Michigan

When we traveled to Texas we had hopes of hearing that they had some new advancement or treatment options that were cutting edge or even to hear that they had existing survivors that we could relate to and hear the success stories and treatment that worked.  

We once again heard that this is so rare and there is no protocol.  We had previously sent down 77 pages of his medical records as well as the last 2 years of scans which took up 9 DVD disks.  The beginning of the visit was going over the medical history and clarifying some of the details.  For the most part they agreed with the treatment for the previous rounds of chemo and radiation and said there was little different they would have done. They also agreed with the treatment plan for this time.  

The head oncologist came in and said she would like to do a sequencing on the tumor to break down the mutation at a molecular level to see if they could store the data in the event that there is a future targeted therapy discovered.

She then said it is not a matter of if this cancer comes back but when and where.  She is confident that since his body has gotten so good at the mutation and allowing it to travel through the bloodstream into another part of the body it will be back.  The positive in that is he is very responsive to treatment and anywhere other than the brain can accept chemo drugs.  So now we can be more specific in our prayers that it stays out of the brain!

We were a bit deflated after leaving the hospital that day but decided not to let that ruin our rare alone time.  We decided to have a nice dinner and enjoy the sunshine together.  The next morning, we took the shuttle to the Houston Zoo and spent a few hours laughing and admiring the new baby elephants and the active sea lions.  One thing we have learned during the past few years is to take every opportunity to enjoy each other and our loved ones.  We came home exhausted but confident in the plan already set in place in Ann Arbor.  

Last week he finished up the last of his radiation treatments and started the last few weeks of the steroid taper.  We saw the pulmonology specialist and he decided he wanted a better look at the infection in the lung.  It is not uncommon when someone is on a steroid for months at a time for the immune system to decide it doesn’t have to work anymore and for the liver to act up.  Last week’s bloodwork confirmed both of these issues.  His immune system is not functioning and the liver is off the charts. His arms and legs have lost a significant amount of strength and this face and trunk have swollen to twice the normal size.  We are told this will slowly go back down as he comes off the steroids but it will take some time; he is not happy about that!

I am sitting in the waiting room waiting for this bronchoscopy and praying it is just an infection that is treatable by antibiotics. He has been very out of breath and tired for the past month or so and this is likely the cause.  Despite being tired, having low visibility and muscle weakness he was such a trooper this weekend.  He insisted on going to Taylor’s graduation commencements and stayed with me until 3:30 am at the Project Graduation party that I have been working hard on.  He is so positive and supportive of everything the kids and I have going on. We went to see a client yesterday and then he went to baseball in the evening.  He is determined to beat this and be the best, positive, faithful person he can be.  So far, his positive attitude and faithful prayers have brought him to this point. UofM has said there is no other patient where he is.  Any other previous patient with similar metastasizes are no longer walking this earth so they are in awe and one doctor even said keep doing what you’re doing because it’s working.  His response was “It’s not me, this is all on the Lord Jesus.”

I will end this with one of my favorite verses: Joshua 1:9

“Have I not commanded you? Be strong and courageous.  Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”

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God’s Glory

Good morning, I asked Heather if I could have some space on her blog. She has done an amazing job of keeping people updated through this and the response she has received has been overwhelming. We receive notes, support, kind words, prayers daily from friends, family, distant friends, acquaintances, clients, even people we do not know. It is uplifting, encouraging and a huge support; at the end of the day it is a reminder of God’s love for us as He puts these people in our lives. Yesterday on the ride to the hotel from the airport we met a Doctor of Oncology who has a brother in law at MD Anderson who is a Radiologist, he was going to call him and ask that he check on us today. We met a woman that lives here on the same ride that asked for Heather’s phone number so she could call her today and offer support or anything else she needed. All just through conversations of kind people asking what you are doing in Houston and where are you from. I exited the shuttle laughing that once again God had placed amazing people in our path to make our day brighter.

Heather received a note through Facebook saying the words she shares that express her love for our family and positive outlook are an inspiration. I am grateful that we can inspire others through our story. We laugh every day, we hug and hold each other every day, we hug our children every day, and we acknowledge the beauty God puts in our lives every day. I am not lying when I say we are truly the most blessed people in the world. I am blessed that we are not here seeking a cure for one of our children, I am blessed for the love of my wife, I am blessed to have my healthy children, I am blessed that our business and clients support us, I am blessed that I am not in treatments alone with no support.

Last night I reminded Heather that whatever MD says today, simply does not matter. There is only one person that knows the day we take our last breath. Job 14:5 “A person’s days are determined, you have decreed the number of his months have set limits he cannot exceed.” While we will do whatever we feel God has called us to do to continue this battle, we firmly believe it is all in God’s hands and not ours. This gives us both an incredible sense of peace. That does not mean I will be cured, or that MD is going to provide something astonishing that UM hasn’t provided. It means that all paths lead to one end, and that end is only known by one. Therefore, we don’t stress, we don’t cry, we carry on the path Christ has laid out praying there is much more to our story yet to come and to share. As all of you continue to pray for us, I want you to know we are at peace and have great comfort. We greatly appreciate all the words, support and prayers, they literally uplift us every day.

I want to leave you with this, appreciate and acknowledge the beauty God puts in your life today. Hug your spouse and your children, enjoy the sunrise and sunset. I am not the person I was 5 years ago, cancer in many ways has opened my eyes, my heart and my awareness to the beauty of life, my family and God. Things I would not change for anything. I am glad our story inspires, but I hope our story makes you seek the comfort that God can provide. While you may not realize it, He has placed many of you in our lives to provide that comfort to us.

Have a blessed day…we will.

Keith Green

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Post-Op Update Take Two!

Going into surgery this time we assumed there was cancer but knew that it could also be damage and inflammation from the previous radiation. With that being the case, the 8-hour surgery was extra agonizing because as much as my amazing friends and family helped me stay focused on other things, my mind kept wondering what was going on in that operating room?  I did get updates every few hours but nothing would be revealed until the surgeon came out to talk to me after it was all over.

After 8 hours I sat down with the surgeon and discovered that in fact there was a significant amount of cancer tumor that was successfully removed. There was also dead tissue as well as inflammation and what he described as a bubbly material that was extreme damage caused by radiation.  He was very confident that the tumor came out cleanly but explained to me that there are always microscopic tumor cells left behind.  That is the reason for radiation following surgery.  They have to “mop” up any cancer left behind.  With Keith, this becomes a discussion because he had the radiation following tumor removal last time and not only did the radiation not kill the cancer, it caused a lot of damage to the brain tissue.  He said we would go before the tumor board again and see what other doctors thought.  

The hospital stay was as quick as before and once again Keith amazes the doctors and nurses at how well he recovers and gets released. He was out in 36 hours and so ready to be home!  He had a very interesting roommate this time and got so little sleep due to around the clock neuro checks he begged to get out.  

We’ve been home for a little over a week and he is still not sleeping well.  He has multiple issues causing interrupted sleep.  The first problem is a constant cough that has been diagnosed as everything from GERD to thrush with nothing helping so we still don’t know what is going on.  He is taking cough syrup on top of all of the other meds.  He only took half doses of the pain medicine the first day and has been controlling the pain with just Tylenol ever since.  It’s amazing.  The second issue with sleep is the steroids which cause him to wake ever hour or 2 in the night.  He is exhausted all day and night and just can’t get to sleep.  He sleeps best propped at about a 30-degree angle which had me looking into adjustable beds that split up the middle-I’m a stomach sleeper- but they are down the list of priority right now…

While we were still in the hospital we met with each of the doctors and we didn’t get an overly confident answer as to the direction they wanted to go once the incisions healed.  What kept repeating through my mind was the doctors saying they just don’t see squamous cells in the brain…the brain doesn’t allow chemo in unless you trick it and then you are opening it up to other issues…radiation is less likely and can be risky the second time…

That had us talking about looking for a doctor that has seen this before.  Surely, he isn’t the first person to have throat cancer metastasize like this. There has to me another option.  I started doing research and found a clinic in Texas called MD Anderson.  Keith said he had heard of them and they are known globally as a top cancer center.  I filled out a quick questionnaire on their website and requested an appointment.  In my mind I thought even if we get a call back they will be booked out like 6 years.  To my surprise, they called the next day and in the last week I went down and got copies of scans on disks and the last few years of medical records and they have a doctor willing to see us next week! I couldn’t believe it.  They even got approval from our insurance company.

We had a follow-up appointment Friday at U of M where we learned that the tumor they removed went in front of the tumor board today with all of the pathology reports and even still they were conflicted as to the recommended treatment going forward.  We left the hospital feeling like surgery was definitely a good choice and that what we do from here is our choice.  We have an MRI scheduled for this weekend after they remove the 28 staples from his head.  They will be doing the radiation simulation and making his mask that screws him to the table during the radiation treatments and then depending on what the doctors in Texas say, we will move forward with radiation or not.  They did mention looking for an immunotherapy that is designed for squamous cells but these doctors didn’t know of one done in Ann Arbor.  

The doctor also asked if we would want to have a genetic mutation research done to try to determine what it is about his cells that are reacting so differently than expected.  He has signed up for other research studies in the past reasoning that if it could potentially help find a cure or treatment option for someone else it would be worth it.  So, for now we wait, heal, and pray.  And try to rest, but with 3 kids in travel sports, another with a dance recital coming up and a senior in high school that is nearly impossible!  We wouldn’t have it any other way and wouldn’t miss anything if we can help it.  

[mrskeithgreen-blog]

He’s alert and eating like a horse. He said his taste buds are back and everything tastes amazing...U of M has better hospital food than most but I wouldn’t say amazing! All of his lines are disconnected and we’re just waiting on a bed to open up on the normal neuro floor. We’re waiting for the rest of the team to come in and discuss next steps of chemo/radiation or whatever treatment they come up with. For today he can see and taste better than he has in 2 months so it’s a victory! God is good

[mrskeithgreen-blog]

Pressing On

What word do I hate most in the English language? Cancer. To be honest, I don’t think anyone likes cancer; except maybe pharmaceutical companies.  But as I sit here reading the last brain scan results I am wondering how in the world this has become the norm?  When my kids were babies, or at least the first baby, every cough made me call the doctor.  That’s how cancer makes you feel every day of your life.  No cough or ache or pain goes unnoticed.  I would say I was born to be a caretaker.  It comes naturally to me which is why I wanted to be a nurse at a young age and wanted to have a lot of kids.  While I did not finish nursing school, I did end up with a lot of kids and a husband with cancer 4 times.  I think I get on his nerves being to motherly so he ‘forgets’ to tell me when something feels off.  He told me a few months ago that he is not going to live his life worrying about every little cough.  While I agree worry is not something I waste time on, I do take notice and get things taken care of.

It was about that time that we were preparing for the routine 6-month post brain tumor scans and doctor visits.  During that 6-month period after surgery, his vision had improved quite a bit and it seemed that he had about 75 percent vision.  When I would say I still didn’t think it was a good idea to drive, he would point out every old driver in every parking lot and tell me how terrible they were at parking and that compared to them his vision was stellar.  Did he think I enjoyed driving Miss Daisey around every day?  It’s a wonder I knew how to drive at all when I was alone in the car since he is such a great backseat driver.  I just smiled and said pretty soon you will be able to drive again and then I promise you will get 100 percent of the errands to run and kids to take to school and run to dance, soccer, baseball, football, basketball and friends’ houses.  Until then, I will be doing all of the driving.  

 It turns out you don’t know what you can’t see.  At the 6-month follow up scan and appointment we were told there was a significant change in the brain activity compared to 3 months prior.  After some more tests it appeared that he had again lost more vision.  The 75 percent that he had in November was down to 50 percent by February.  He had no idea.  The only way I can imagine it is if someone is standing behind you or at 5 o’clock, you don’t know they are there because that is beyond your scope of vision.  For Keith, regardless of which eye is closed, he couldn’t see you until you are between 9 and 1.  In the last few weeks, that has dropped even further and his window of clarity is only from 10-11 with some fuzzy pockets and some completely black pockets.  I honestly can’t comprehend it and I am with him 24 hours a day.  He does amazingly well for having limited vision.  Today he described what he sees as having a slow refresh rate of a tv.  For someone so intelligent and so hard working, I can see the frustration on his face when trying to read a text or an email. Thankfully he had a good typing teacher in high school; you’re not supposed to look at the keys when typing 😊

Since that discovery on the scan in February, the doctors were optimistic that this was a minor setback and that it’s not cancer coming back.  They called it radio necrosis, which basically means that the radiation he had done after surgery is causing some tissue to die and it is making the area inflamed and there are some leaky vessels.  Nothing a steroid taper couldn’t take care of and the vision should start to come back.  So, started the dreaded steroids.  On most days, he has an incredible optimistic outlook and a great sense of humor. Other days, he says or does something and refers to the third person steroid saying things like, “you’re not going to believe what the steroids said to Bob last night…” naturally I just shake my head because what can you do.  After a few days of steroids, the headaches stopped but the vision seemed to be getting worse.  The doctors said to give it more time and set another appointment.  By the next appointment his vision was down even further and when asked what side effects he was experiencing with the steroids he started with his list and they said, “wow, you have every one and then some!” Since the steroids didn’t seem to be working, they suggested a clinical trial for a new drug that is designed to cut off flow to the blood vessels causing the problem.  Since they seemed confident this drug would work, we asked if it was only available in the trial or could we just get the drug.  First of all, the drug is over $100,000 per dose and he would need at minimum 2 doses.  If we got into the trial, the drug is covered.  The down side is that it is a double-blind study so you have a 50/50 chance of getting the real thing.  Since his vision seemed to be getting worse and this seemed the best option, we signed up for it.  After doing all of the necessary tests and scans to prep for the trial, we received the response back that he was denied.  

It was about this time that we received a call that Keith’s ex-wife had suddenly passed away so all medical appointments and decisions were put on hold as we had to begin planning a funeral and going through all of the legal issues not to mention trying to figure out how to tell a 10-year-old and 14-year-old that their mom had passed away.  These two kids are absolutely amazing to say the least. Most people don’t have to deal with addiction, divorce, cancer, or death of a parent until much, much later in life and they have been dealing with this most of their lives.

The day after the funeral Keith had a few ‘episodes’ of confusion and memory loss that was extremely concerning.  He snapped out if it within about 20 minutes.  He convinced me that it was just all of the stress of the funeral and the lack of sleep and everything involved in going non-stop for the past week and that he was fine.  When he told me that he was freezing cold and he had a metallic taste in his mouth I said I am calling the doctor.  The doctor on call said to increase the steroid and keep a close eye on him.  Trust me, he doesn’t get far out of my sight.

The doctors called in another brain scan and scheduled us to meet with the team.  Yesterday, what I thought was going to be a quick visit and maybe a change of meds turned into a 6 hour, 7 doctors, a chest x-ray, 2 blood draws and surgery prep. It seems the cancer is back in the brain.  Surgery is scheduled in 10 days.  There is a chance they get in there and it is just the radio necrosis, but all signs point to cancer.  

To say the wind is knocked out of his sails would be an understatement.  Keith is one of the most upbeat optimistic people I have ever met so to see him with anything less than a smile makes my heart hurt.  He is not afraid of death, he has complete faith that our heavenly father is waiting for him when the time comes.  Being the selfless person that he is, he is worried about me and the kids. While it feels like we have known each other for much longer, we have only been married for two and a half years. In our short-married life, we have experienced cancer 3 times now.  We are not promised that tomorrow will be easy or even that we will have a tomorrow. That said, I do not believe that means you give up trying.  Trying to be better, and do better, and love those around you.  Sure, there are days where I would love to stay in bed all day but then I look at my husband and kids and see the hope and love in their eyes and press on.  Philippians 3:13b says “But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” Rather than showing our kids a ‘life sucks’ attitude and ‘why is this happening to us?” we choose to wake up every day thankful for one more day here.  We chose to turn the “why is this happening?” into “what is God trying to teach me right now?”

I think the hardest part of all of this for me right now is seeing the change in my husband.  He has lost the sparkle in his eye that made me smile.  The loving, compassionate, sweet man I fell in love with is still in there but this cancer monster keeps taking over and I have to remind myself that this isn’t him and keep hope that this is temporary.  Of course, the thoughts of him waking up from surgery and not knowing who I am crosses my mind.  The possibility that with surgery his vision may worsen and stay that way permanently is on his mind.  My heart is heavy this week and the tears are many; I can’t seem to get them under control right now and I’m usually pretty good at that.  I know we will get through this and it will make us that much stronger, but a little sunshine and a nice boring stretch would be ok too…

[mrskeithgreen-blog]

Hidden Treasures

Hurry up and wait…I am sitting in yet another waiting room. I said I actually like the Pet scan waiting room because they usually have HGTV on and you know I love some Fixer Upper.  I was right, except it’s Property Brothers tonight.  I have learned that this can take hours so I’m armed with a trusty bag of goodies; computer, phone, chargers for both, two books and lots of work to do. My knitting supplies are all stuck in the basement under all of the construction.  No, I could not get through everything but I never know what kind of mindset I will be in so it’s better to be prepared than bored for 3 hours while your mind wanders.  

So today is a full body scan which I pushed for against my husband’s groaning.  He should know by now I am not one to sit around, I like to know everything and get things done.

On a routine 6-month post-op brain MRI and neurosurgery follow-up, they saw some concern; both on the scan as well as in the changes in his vision.  Pre-surgery in August he had lost about 50 percent of his vision because of the location of the tumor.  He regained about 25 percent of that back in the past few months and has been feeling pretty “normal” so these results were a complete shock. He gets so sick of me asking how he feels, that I have decided he will tell me when something is wrong.  The problem is that with this vision loss he doesn’t realize it until you do the ‘how many fingers am I holding up?’ and you realize he can’t see them until they are right in front of him.  At the moment, he is down to about 10 percent good vision.  

We left that appointment feeling uneasy.  We saw the scans compared to the one from November and were blown away at the difference.  There is definitely something there, but since it’s on the brain there is no ability to biopsy.  They said don’t worry, it could just be swelling and prescribed 12 times the normal dosage of steroids to take down the swelling and pressure.  The pressure has reduced a little but the vision had gotten worse.  The only way to know for sure that it’s cancer is to go back in surgically.  For him that means removing the titanium plate they put in 6 months ago and go exploring.  Since that doesn’t sound like a small task, we are left to ‘wait and see’ which is not easy.  

Back in November there was a suspicious lymph node in the neck according to the MRI but was too small to biopsy.  That is also being “watched” at this point.

Keith and I have talked and prayed extensively during the previous battles.  He tells everyone he meets that he is the most blessed man on earth.  After hearing that he has had cancer 3 times, he often gets a look of shock or wonder how can he possibly think that?

Isaiah 45:3 says “And I will give you treasures hidden in the darkness- secret riches...”

Our treasures hidden in the darkness are the long days spent together holding hands in the chemo chair while his body is pumped full of poison.  The silent and spoken prayers for each other and the many, many people we encountered during that time.  We spent our first wedding anniversary in a chemo chair.  While I will admit I shed a large handful of tears that day as he slept, I pulled myself together and searched the hospital for a cake or some dessert to celebrate with.  The only thing I could find was a sugar free pudding cup, but we enjoyed it together laughing about the absurdity of it all.

We promised each other that we would never take another day together for granted…but of course as the days become months and hair grows back and wounds heal, life becomes routine and our promises get dusty.

18 months later, surprise! This cancer has moved to the brain. Ok, God we hear you! What are you trying to tell us this time?  We had just moved into our new house 2 days prior and our life was physically a mess; I couldn’t find his coffee pot and the kids didn’t have their bedroom furniture put in their rooms yet.  I had to completely let go of my need to micromanage and trust that He would provide. The important thing at that moment was to care for my husband and trust that the rest would be taken care of.  

We were in the hospital for a few very long days and thanks to so many family members and friends the kids were all taken care of, their bedrooms were put together and my main kitchen boxes were unloaded; not necessarily where I would have put things but I decided to let it go and focus on the important thing-my husband was alive!

I cannot put into words the feeling of being in a waiting room for what seemed like days as my husband was in brain surgery.  My incredible friend wouldn’t take no for an answer and showed up with caffeine and chocolate and just sat with me while we waited for the surgeon to come and tell us the amazing words that he did great and was already asking for me.  I have to admit, I was worried he wouldn’t remember my name!

In the days that followed, I went into full nurse mode…changing dressings, counting out meds, checking temperature, and a few other things he wouldn’t appreciate me writing about!

Our treasures appeared once again and meals starting arriving at our house on our busy days when I had to leave and drive kids around.  Being the only driver is no easy task with all of these kids! The people who stopped by just to give me a hug, or to bring a meal, or to send a card or gift card brought us both to tears.  

I have always been the type of person to offer my help; those who know me well know I don’t know what the word no means.  Teenagers are another story. But in life, I am usually the first one to sign up to help in a fundraiser or classroom but have always been hesitant around death and sickness.  Not because I didn’t care but because I didn’t know what to say and didn’t want to intrude.  I have learned to stop being the person who says, “call me if you need anything” and to become the person who listens and anticipates what someone needs and just show up.  Just show up with a meal, or to take their kids to a movie, or to shovel their driveway, or to go to the grocery store.  I learned that while it may be a parent that is sick, the whole family is suffering. When bringing dinner, I add a movie, popcorn and cookies for the kids so they can have a “normal” family night even if it's just for a few hours.  Don’t wait to be asked and don’t worry about having the right words.  God will give you the words if He wants you to speak. Do from your heart and you will be amazed at what riches can come.  And better yet, have your kids go with you and help.

I don’t know what will come of today’s scan and what lies ahead in our lives.  What I do know is that God knows.  If He knows the number of hairs on my head (even the ones turning gray) surely, He knows what is in the works and it is my job to keep my eyes and ears open to find out what is in store according to Him even when it doesn’t seem ‘fair.’  And lastly, never forget the little ones who are watching and listening and learning.

[mrskeithgreen-blog]

Counting our blessings

The past few weeks have flown by. This summer has flown by! I can't believe these 5 kids will be starting school next week! Our house is still only partly unpacked and trying to take inventory of what they need is quite a task! Our dining room looks like an aisle of an office supply store! The kids are getting excited about going back to school, some more than others.

Keith has been getting more work done from home than he ever did in the office. He works at 3am when he can't sleep. Then he starts his day at 6:30 with a cup of coffee in the living room. He's been making conference calls from the dining room in the evening and hasn't missed a beat! The business is growing and we are looking forward to getting back into a normal schedule of life.

Tomorrow we meet with the radiation oncology team for a Ct scan and MRI to begin the planning process of radiation points. He will need the dreaded mask again which clamps him onto the table for the duration of the treatment. This mask should be a little less invasive compared to the one for the throat cancer. Thursday is the neurology ophthalmology appointment so we are praying they can give us some insight as to what to expect with his vision going forward. We are very optimistic that these appointments will be successful and the future is looking bright! God is good!

[mrskeithgreen-blog]

Follow up day! The staples were all removed pretty painlessly. The tenderness and pain apparently is normal and should start to subside. The vision has changed. Some ways he says it's better because he can see movement where he couldn't before but still has to really focus to read. He says it's almost like double vision but harder to explain. That makes it frustrating for him to read and type. He's still texting using the voice to type feature which can end up being quite funny. They are concerns that he's been experiencing numbness since Friday and it's getting worse. Friday he woke up with a little numbness in just the fingertips of the right hand. It has gotten progressively worse and has now taken over the arm up to the elbow. They ordered a CT scan to check for bleeding or fluid in the brain which could cause this. No results yet. We did see radiology oncology and received some bittersweet information. The good news is that he will at most only need 5 radiation treatments. The bad news is that this cancer has about a fifty percent chance of recurring. The purpose of the radiation is of course to reduce that and hopefully kill any residual cells that may have broken away from the tumor. Nothing is one hundred percent guaranteed but we joined another study because treatment is always changing and improving and if our experience and outcomes can help improve the lives of others that would be a blessing. So overall a pretty good but exhausting day. Oh! And we learned his skull was put back together with titanium plates and screws so the kids thought that was cool! More updates after next weeks appointments.

[mrskeithgreen-blog]

One week

I can't believe it's been a week since we came home. His scar is healing up nicely. He is amazingly optimistic that he is going to fully recover. We have a lot of appointments starting next week. This whole idea of him not being able to drive is getting old and a bit frustrating for him. He's confident he will be driving again soon. This morning he attempted to control the pain with just a Tylenol and that did not work so well. He finally took his regular pain meds and took a nap. He's been out helping me with little jobs in the garage and it's been so nice to feel like things are getting back to normal. We're looking forward to a nice weekend with the kids. With all of this going on we have resorted to shopping online for school clothes and school supplies. Sarah had quite a virtual shopping cart going this morning. Lol. Making memories!

[mrskeithgreen-blog]

Long Night

To say he is a trooper or a warrior or a million other similar terms would be an understatement. We have officially been in our new house for 10 days so to say it's chaos here with and unsolved issues with water softener and water heater not to mention all of the unpacked boxes leading to missing items would be an understatement. We have no dining room or living room furniture so last night he insisted riding along with me to pick out some furniture. I think it wore him out because while it was nice that he sept a longer stretch last night he woke in the night wrenching in pain. I could not get the pain under control. I was praying for some relief because nothing I did seemed to help. He has o oh been taking half of he dose of pain meds up until that point. I gave him all that he could have and put an ice pack on his head to reduce pressure. His sinuses are all stuffed up and he's got an intense amount of pressure behind his left eye. He finally felt enough relief to get a few more hours of sleep. I haven't seen him in so much misery since his big dose of chemo last year that left his mouth full of open sores. Despite all of the pain he said he wanted to try to go to church this morning. The message really hit home and has us taking about how blessed we are as a family and that we need to do a better job of showing it especially to the kids. Last week when we told the kids that the cancer was back and this time it was in the brain they all asked questions except for Brandon. His 13 year old mind was deep in thought. He later came up and asked "Dad, why 3 times? Why do you have to have cancer a third time?" Keith answered,"I don't but I do know that I'm not yet the man I need to be or that God wants me to be. We can all be better. Maybe we use this for awareness or as a way to give back." We can all do better and be better. Keith and I have had the most alone time we've ever had in our entire marriage this past week. We have had some really tough conversations, some emotional, some just plain serious and some more hopeful. We are praying for what exactly God wants us to learn and do with this. I don't know anyone else who has had cancer three times. It has certainly humbled our family caused us to start looking at priorities in life. When he beats this cancer we will be stronger and more focused with a God spoken purpose. We are surrounded by so many amazing people who have taken the kids and brought us food and prayed for us. God is good!

[mrskeithgreen-blog]

Home Sweet Home

After a trip to the pharmacy we made it home. He was in more pain due to the bumpy roads. Not my driving! He took all his meds and we crashed. So nice being in our own bed. He says he felt better able to lay on his side here than propped in the hospital bed. He's on the road to recovery. We get staples out on the 22 and see oncology that day as well. Thank you all for so many prayers and support! We feel beyond blessed once again in our journey.

[mrskeithgreen-blog]

Let's Go Home

The surgeon just came in and asked if he'd like to go home. Yes!! The head wrap will come off and they are going to give me instructions on how to take care of him. Sounds like we could be home by lunch if everything goes smoothly. He is doing so well it's amazing! True miracle