Going home...

So the time has come to finally say good-bye. Since the last post, so many things have transpired. First of all, I reported the CT results wrong. Instead of no growth of any mets, the original 6.3 mm growth actually became 5.8 CM, I mistakenly read it wrong, I thought it was still mm. Which means the 1/2 growth grew into 2.5 inches from May to September on the right lobe of the liver. There were new ones on the left side of the liver also, 3 about the same size as the original one in May. So that was not good news. My Dad continued to be strong through the months of September and October, working outside, planting his grass, going out and around shopping. My family, went to North Carolina, to work on our relationships in a family intensive. It was the perfect thing to do because of all the travelling and separation during this year.

 Before I left in early October, Dad went back to hospice. We took the advice from the palliative care doctors office as I wanted to change from the last hospice. I wasn't satisfied with the care he had been given prior to revoking hospice to get his CT scan. My Dad's pain had not been well controlled and they wanted to give him methadone instead of giving him the sublingual dilaudid which was working so well as he had run out before their allowed time. I had no access to the doctor and the nurse was rude and condescending to me, at one point almost hanging up on me as I suggested alternatives for meds which they were not willing to provide. So I "interviewed" the new hospice suggested and they assured me that they would not be that way, they only had 75 patients vs 300 which this hospice had. I also found out that there are 300 hospices in the Dallas/Fort Worth area. I found out that hospice is a money making venture and that all hospices are NOT the same. So without any researh I took the advice the of the palliative care doc and bought the sales reps or "patient liason" speech, that they only had 75 patients, they were a Physician directed hospice vs a business model, the doctor came out personally and met the patient before care started. The day I left the new RN case manager came, she right away checked out Dad's med list and said, oh, we do not give this, and the new doctor will have to assess what he really needs even though my Dad had just had an appointment with the palliative care doc the day before. I wrote a note right away to the patient liason, and he said he would forward it to who needed to see it. I had also wanted the ability to skype in with the doctor visit, however, the doctor was suspiciously unavailable the times I would be able to skype in, unlike how flexible the liason said he would be. What also annoyed me, was that the nurses line was restricted, so that you would be unable to call her back without going through the main line, which results in more waiting and miscommunication. You also were only able to talk to the doctor now in charge of my Dad's care once. In 2000, when my Mom was in hospice, you had contact with her oncologist and primary care doctor, and they could direct their care. Now, the hospices have a medical director who takes over your loved ones care, and only if the primary chooses to continue care provided the hospice allows it and not hand over the care to the medical director, which they do most of time, the hospice doctor is in charge of all the medications and the primary has no say whatsoever. It was a bitter pill when the nurse practitioner whom I had liked so much said, I am done, and the hospice doctor will take over the care. I felt betrayed. She had just fine tuned all his meds to make him feel the best, and the new physician directed hospice decided to change 95% of his meds. That is not good or the best for an 87 year old man to switch all his meds with one fell swoop. I immediately wrote a letter to the doctor which back all the latest research on the meds my Dad was on and my concern that he would switch the medications which were working so well for him. He did not like that one bit. I received a call from him that he had conferred with the primary and they decided that we were not a good fit and that we should start looking for new hospices. #1 he lied about the primary conference. His excuses for changing the meds were lame and profit driven. So the day before I was to leave for my 14 day family trip I was on the internet and phone trying to find the best care for my Dad. Here is a link that is very educational God forbid you would ever need to find a hospice.https://jehingr.wordpress.com/2010/08/09/what-the-hospice-companies-dont-want-you-to-know/

 After speaking to 4 different hospices and looking for a hospice that would transition from palliative to hospice or had an open hospice plan, I finally decided on VNA of Texas. They were very understanding, I received multiple calls from multiple people and knew they were going into the pilot program of palliative to hospice in 2017. It has turned out to be a good decision after much prayer and discussion with my husband.

 Last Saturday, Nov 5th, my Dad went to the eye doctor with my sister. He wanted some new glasses before he went to the Philippines. He was feisty as ever. On Tuesday, the hospice notice visited and found that my Dad's condition had declined markedly since her last visit the week, he was very weak. That day, my Dad insisted that my sister take him to Costco to pick out his new glasses. While there he could barely walk and they ended up getting him into a wheelchair after picking out his glasses. After that he had some bouts of confusion and my sister left to come home. At about 5 pm he could no longer stand and his left side became "paralyzed." My brother called and he sounded scared as he said he was wondering what was happening to him. I was hearing this as I was preparing to come and board my plane. It hurt my heart so. The same plane that my sister came home on was the one I was to take to Dallas. It had a maintenance issue and the flight was eventually cancelled. But God is always on the move taking care of those He loves and depend on him for help. Our good friend, Scott, is a Delta pilot and was able to get us nonrev tickets out the next morning. We were even the only ones listed on the flight. My stepmom had a rough night with my Dad but settled him down with a sleeping pill. He was worried about me coming. Thankfully, he had his mind occupied by the election results. At this point I was having a rough time keeping it together. I called the hospice line and told them about his condition. I found out that in order to get him to bed that we would have to call the fire department for lift assistance. I said we would just keep him on the couch until I got there. They were going to send a nurse in the morning as he was settled down. When I arrived the nurse was there. She was ordering him a hospital bed to come that day. We decided he didn't have a stroke but instead had tumor compression on a nerve causing the paralysis. I was able to greet my Dad as he was coherent and told him Trump had won the election. He gave me a big smile, his man had won. I was happy he heard this, as he had been talking about the election since it started. He wanted to come to sit at the table with us for lunch but we convinced him to stay in the couch. Dad was pretty out of it the rest of the day due to the sleeping pill. On Wednesday night he slept most of the night but had a few bouts of restlessness and pain for which I medicated him. That night I also called 911 to get the local fire dept to come and lift him from the couch to the bed .

 The next day, Thursday, the hospice nurse came to assess him. He was able to wake and identify her. She said to keep his pain under control, he was able to take his morning meds and a few bites of food. I gave him a dulcolax suppository so he could have a bowel movement as he hadn't since Monday. We ordered bed rails for the bed as I said he was grabbing things trying to get up and was confused at times, as well as a bedside commode. He the "big" one at 530, I was able to get him out of the bed and to the commode and back. For this I am so very thankful for my experience as a nurse. My stepmom and I kept saying how God had always provided, when things became hard medically for Dad I was always around. He was doing well and he even drank 1/2 bottle of boost. At 7 pm, my Dad started to sundown. The night became extremely difficult and emotional as I watched my Dad enter what they call "terminal restlessness." It is when the brain is trying to keep one leg in this world and transition to one leg in the next. It is marked by confusion, moments of clarity, and combativeness. I wish I would have called for help earlier but I tried to medicate and sedate him with what I had in the "hospice box." I finally gave up and called for help at 3 am. I was able to give him enough meds to finally settle him down at 5 am, and I called the nurse and told her not to come. He had been spitting out the meds and at one point grabbed the syringe and threw it out. My stepmom and I were emotionally distraught. At 7 am the cycle started again and I called again but I cajoled him to take some ativan and his dilaudid, at this point it is sublingual. The night before we had to call the fire department again to transfer him to the couch and back as they had to put the bedrails on the bed. In order to do this you call 911 and call lift assist. The fire dept is blocks away from his house and they arrived incredibly fast and were incredibly compassionate. Again the Lord was in charge, the bed rails came just at the right time to keep my Dad from harming himself.

 When the nurse came she had already initiated "crisis care." It is when they send a nurse 24/7 to help assist my Dad in the dying process. This was Friday, Nov 18th at 10 am. She said it usually only days at this point and that I should tell my family. My Dad is going home. He has fought the good fight, and has been incredibly courageous through out. My heart is grieving. My thoughts are scatterred. My youngest brother and sister arrived last night, my oldest brother in about an hour and John will be here at midnight. His only living sibling out of his 10 siblings is coming in around 5 pm tonight. We would so appreciate your prayer, my kids are rightfully fearful at this time not knowing what is quite happening. The Lord is my strength and my song, He is holding our family right now.

Deep Waters

Wow, what a difference a few days can make. One day you see your loved one, so strong and courageous, fighting illness off well, and the next day you see utter despair, weeping and grieving. I do not want to be premature, on the contrary, I am an optimist at heart, however.... My Dad's physical and emotional health has declined more than I have seen in the months I have been here in the last few days. He is no longer coming to the table for lunch or dinner, and my dear stepmom is hand feeding him at times. My Dad knows that to eat means life, and his body may be shutting down and telling him, no it's time to stop...God designed our bodies beautifully perfect, and the body knows how to die well given it's natural state. I do not want to say this is it, but it hurts to see this now. Dad's chemistries(bloodwork) were amazingly normal on the 15th Sept. The only thing off being he was anemic and had a low potassium, the potassium issue he has had for years. The insurance finally precertified his requested CT scan-oh, the woes of revoking hospice so you can receive care that enables you to see how your disease is progressing...I have spent more time on the phone with medicare, his insurance suppletment, drug prescription program, and the doctors trying to reinstate his insurance. Hospice is not something to just jump into because it is difficult to go back to "normal" care again. All this to say, you cannot predict what cancer will do, nor when. As I have written before, I never forsaw how well he would be doing 7 months after this terrible diagnosis. My Dad has been so strong, not complaining about his pain, as you hear from other patients with pancreatic cancer. He has been a pillar for us, offering up to God whom he knows has his life in his hands. My Dad has seen so many things in his 87 years and really has had a wonderful contenance. Even with all his quirks and idiosyncracies... It hurts so to watch again, just like I experienced with my Mom, the facing of losing someone who sacrificed so much to help you be at a place you would be at today. These last few days my Daddy has weakened, and I see the weariness of battling this disease. He has repeatedly told me, his wife, my younger brother that he does not have long. He knows, his body is telling him with his failing appetite. He wept about not being alive for the election(although that might not be such a bad thing), and not being to able to go back to the Philippines, which really breaks my heart... But, he still has some fight in him. He is going to try megace(hormones that increase your appetite, funny, it is progesterone, the pregnancy hormone). We have had "discussions" about what happens immediately after death, do you sleep and rise again at the final day or are you immediately in the presence of Jesus awaiting the final day to receive your eternal body. I know what I believe and with that he still wrestles...he accepts both of them however, I disagree with some of his theology, which is OK, I will see him again regardless. I may be wrong, he may have more days than I think. And I would be happy with that! Yet... I am weary. He is weary. We are all sad yet we have hope. Our waters are heavy, please pray for us when you think of it.

Just keep swimming...

September 15, 2016

So it has been 4 months since my Dad entered hospice. He is down 5 lbs from 116 to 111 lbs. We revoked hospice as he wanted more tests done. Our health care system has been messed up by Obamacare, now in order to figure out what your cancer is doing you have to revoke hospice. So unlike 16 years ago when my Mom was in hospice, pre Obamacare. Not only that hospice providers are not all alike. Some have 300 patients and have a business model, while others have 75 patients and are Physician driven, who do you think gives better care? At least at this point in our health system we can choose a different one, as the system is now going that may no longer be an option. Hospice Plus did not adequately address my Dad's pain. It seemed like they wanted to overdose him on his narcotics. As a nurse looking at the dosage I was appalled at what they would have a lay person give a man of his stature. My poor brother who was taking care of him during his pain episode had no clue what it would do to him. he was being a good son trying to help my Dad get good pain relief. I worked many years as a nurse, with experience in oncology and am skilled at pain management so I know how to titrate Narcotics to achieve control. Not so the laymen. So my Dad was snowed and later started hallucinating....yup good way to send them to a coma or a place of no return. Other than that my Dad is doing amazingly well. It took a few days to clear the morphine out of his system, and more fights with the hospice nurse and physician. Now he is holding his own. He takes a walk daily, eats like a bird, does some planting and goes out a bit to do some shopping. No nausea, pain when controlled at a 1 to 2, a dull ache. He is waiting to see what his tumor markers say and for a CT scan to see what has happened As well as other labs. Pancreatic cancer, a rarity to see someone surpass their 7th month with it and still be walking around. It was definitely not what I envisioned when my Dad first started this journey. It has been a hard day for me. My wonderful husband left today To go home and work and it will be 19 days without him. It is hard on us all. My family has taken a big hit during this time of our lives. My children are learning the reality of what life entails, and how to serve sacrificially without complaint. I am growing weary. I see some naturopaths that have all said that my adrenals are shot. So I take my supplements and try to get some sleep. I do miss the fall of Minnesota, it is still in the 90's here and hard to go outside for long periods. Funny thing is that they have closed all the outdoor pools, such a difference from Minnesota! We continue to just keep swimming despite it all, in an indoor pool. Ps. Please ignore the errors I am posting from a phone...

Heading Home

So what is hospice anyway? It is a term they use to give care to people not expected to live longer than 6 months. My Dad entered this journey yesterday. Not because we have the CT scan results back yet, but because he has lost 7 lbs in a week. He lost 3 lbs the week before. His CEA tumor marker is at 4.0, high normal is 2.0...He is up doing work still, and is eating. But the cancer is winning...I have been crying almost all morning since I heard this. Not because I didn't expect it, on the contrary, I knew it was coming...and I know that God is still God on the throne and that my Dad will be soon rejoicing in no more pain, no more weakness, or no more tiredness, and will be beholding something ever more wonderful than we can experience here. But my heart is still broken...and I ache for soon not having my earthly Father...for things that will not be on this earth...for relationship past that never was nor will be in this stage of eternity... I am not even there with him. I am home for a month on a much needed respite. My kids need it. I need it. I was sick in bed on Monday but am feeling much better today although my emotions are raw. My brother and sister were with my stepmom and Dad at his oncologist appointment. We are so thankful for a gentle oncologist...my Dad, always trying to be strong for them...I talked to him today and he said he feels good. (except for the fact that I see him wasting away from every new picture I see and I hear about his tiredness from my sibs) I pray now that his homecoming will be merciful and peaceful, and that he will experience joy in the time before he goes. I am so thankful that my siblings have been a wonderful group of support for him. He and my Mom did a nice job raising strong children that love him and persevere through hardship. My Mom died in 2000 of breast cancer that had metastasized to her brain. We rallied then as we rally now. We do not know how long he has. My Dad in the above picture was right before we left for the airport...it is our traditional goodbye picture on the couch. What I didn't say was after that he was blessing and giving my children a benediction...I had sobbed on the way to the airport because I just do not know how he will be when we return. It is okay to mourn for now. My family will continue our respite. This is one of the promises I hold on to. Those who sow in tears shall reap with shouts of joy! Ps 126:5

Update

Wow, what a difference a week can make.  I last left Texas on April 13th.   My Dad had finished cyberknife therapy on April 6th.  He was still sleeping a lot and complaining about being tired.  On April 21st my daughter and I flew back to Plano.  Well,  my Dad is doing much better.  He is driven.  He is up painting the house and repairing screens from the 2 hailstorms that came 3 weeks apart in March and April.  He is taking walks by himself.  He is eating more than I have seen him eat since January.  Praise the Lord!   It is amazing to see him this way,  on Thursday he worked for almost 11 hours straight.  Hard to believe.  So thankful for this season in his life right now!  It has almost been 3 months since his diagnosis and we couldn't have imagined this now.

My stomach has been having a hard time with things my Dad likes to eat.  Kidney, heart, liver, pig ears, pig feet,  tripe.  I love going to 99 Ranch, an Asian's dream grocery store, to shop for him.  My kids notice that 98% of the people that shop there are noncaucasian.  I feel right at home and my husband loves the cultural experience.  Michael and Phoebe also feel right at home.  The store also has this yummy bakery, again it caters to Asian tastes, and it is not too sweet and has treats usually sold in Asia.   There seems to be  Asian oasis' around the Dallas/Fortworth area as the population here is much greater than the Swedish/Norwegian culture in Minnesota.  I have heard however that the Filipino stores are in southern California and you can get the elusive calamansi fruit that is wonderful on filipino dishes...

I also wanted to blog on the Celebration of Life service for Dr. Karyn Purvis.  It was truly an inspiration and blessing to be able to attend.   Karyn changed my life for the better in 2010.  I first heard her speak at the Christian Alliance for Orphans at Orphan Summit in Minnesota. Little did I know that her work would come to mean so much to me.  A year or so later, my kids behaviors escalated from the boundless exhausting energy and John and I sought more information on her work.  We attended a conference in Tennessee the next spring.  Changed our lives and mode of parenting.  She presented scientific information that blew us away, otherwise we would have never thought about changing our ways of parenting.  I was able to attend her professional training in Fort worth that fall and came back with my heart full of what God intended for connection in human relationships.  I was also able to hear and talk to her several times more in the last few years at various conferences.  Also, inspiring and changing me to be a better person and parent. Our great God has used her mightily not only in our families but in thousands of others.

I thought that the service would be packed to the rafters as she has touched countless numbers of people throughout the world with her work.  Surprisingly,  there were probably about 250 in attendance, but I know many from all corners of the earth would have loved to have been there.  I felt special as one to attend personally.  Elizabeth Stryffe from Saddleback church opened in prayer,  Steven Curtis Chapman sang(he is really talented and ministering when not in concert), Dan and Teri Coley and Michael and Amy Monroe from Empowered to Connect read scripture.  The provosts and deans from TCU spoke about her work and the essence of who Karyn was along with some funny stories about her.  She was a gifted fund raiser and had a really dry sense of humor.  Her boss said he was the one who did her evaluations, evaluated her work, and decided pay but he also said, we knew who really was the boss.  The service and following were elegant and stylish, so much of whom Karyn was as a person. The best part was hearing her eldest son speak personally about his Mom.  Dr. Karyn herself came from hard places and she worked hard to answer God's calling in her life.  She didn't start the professional work with "children from hard places" until she was done raising her sons and sending them to college.  Dwayne said it was a dark time in her life at the age of 47 when she went back to school.  She had to take statistics twice before she decided it was no longer leprosy and then finally aced the course the 3rd time. She wasn't about being an academic but she knew it was the means to an end which was getting across to people how to minister to those from "the hard places."  You knew that her son loved and adored her immensely.  She was authentic.  He talked about the last 3 weeks of her life when she could hardly walk and words and thoughts were difficult for her.  She was like this for 2 weeks and then she had a very important meeting regarding continuation for her work.  Dwayne said she got up, got dressed, put her makeup on, and with 2 men helping her walk to the meeting,  she was on, coherent, articulate, and clear for 90 minutes just like the Karyn we know and love.  He then said she went home and went to sleep for the last week of her life.  It was really nice to meet with her colleagues again,  talk with Jim, and get a tearful hug from Henry.  Henry and I really got along well as we both deal with sensory children at home.  Another great blessing was talking with Taylor, who had nothing to do with TBRI, as a student she knew Karyn was knowledgeable in fasting and prayer, she asked Karyn about that and so one day they met at the Einstein bagels near campus and Karyn mentored her about prayer and fasting.  Many people do not know the deep spiritual side of Karyn.  Dwayne wanted everyone to know that every time before she spoke she secluded herself in the ladies room,  raised her hands to the great God we knew, and begged that he would give her the words to share.  Her celebration of life was exactly who she was,  understated, elegant, stylish, creative,  and guilty of extravagant love. Her life work will affect countless numbers even after her death.  My prayer is that I myself and Y'all will be guilty of this "extravagant love" by the love of Jesus.
http://www.legacy.com/obituaries/dfw/obituary.aspx?pid=179622091

Here, there, where?

It's been awhile.  The good news us that my Dad is doing very well with his cyberknife therapy.  Very little side effects.  He has left his "stay in bed feel too weak state."  With that comes it's challenges but we are so happy he is doing so much better.  He has 1 more treatment today, Monday April 4th. I am just amazed.  I admit I was worried it would be more difficult but he has improved instead of getting weaker.  I pray I am not getting ahead of myself as we have 1 more time left.  We are very thankful as we have gained quality time with him.  Please pray with us that this treatment will enable him to be free of the pain medicine he is on so he can become more independent.

Honestly, this journey has been difficult.  Time has stopped for us like many on the chronic illness journey.  The benefits are that it causes razor sharp focus on what is really important to you.  I have become ever more dependent on the grace of God alone.  I bank on the promise that He has not forsaken me.  I am tired of travelling away from my home even though I live my Dad dearly and want to do the best for him.

This disease has huge costs.   Not only resources but the effects on my own family.   I was away 20 days in February and 21 days in March. This coming April I will be away from home 22 days.  Both my children have become more anxious and emotionally distraught at the drop of a hat.  Dad and Mom have less margin for getting upset also.  Too many details fill most of my days whether it is medication or schedules, details of the next flight, appointments, nutrition, and so on and so on.  Then there are emotion filled days of despair, hope, loss, all those that accompany the passing into the eternal world, and watching your loved one suffering.   It doesn't mean that this will happen soon,  it is just what it is like to have that reality right in front of you.  Life is lighter when we return to our home,  but often distracted.

Today, I started an IV on my Dad to hydrate him for the therapy.  I was saddened to see that the last IV caused bruising and purpling...the last nurse was not gentle in her application, and it was a huge vein.   I am not blaming,  but there are so many skill levels in the professional world.  I myself experienced it in my medical journey.  It is just so hard to see this with my Dad.  I ache for eternity during these times.  My Dad has tough veins,  they move, his body is so sensitive to needle sticks now that the veins just flatten and disappear,  he is dehydrated.  Only by God's mercy was I able to get the iv  in one shot,  but it hurts me in a different way than if it was not by Dad.

I do not want to end this post in a down note.  We have experienced so many extraordinary graces.  I dropped my dear Phoebe off at respite care this morning.  She will be in a home for a few days so I can tend to my Dad without upsetting her further.  This time has been tough on her, and I cannot give her what she needs which is tight structure and high nurture.  She is in a home with an "elite Mom", one who has parented biological children and 23 adopted children.  She is amazing and experienced with children like Phoebe, so her healing journey can continue and I won't feel so overwhelmed.  She gets to work on things she struggles with in her life currently and not go backwards on the skills she has gained over the past year.  That is one extraordinary grace.  The other is I just booked 2 future roundtrips for MSP/DFW for my family and the 2 dogs for 406 dollars.  That is a steal if you ever fly and with pets.   Spirit airlines has proved to be a huge provision for us during this time.  You just need to be smart on how to fly them and deal with occasional delays.  Number 3, people bringing meals to us both in Texas and Minnesota.  Number 4,  John's Dad willing to come and watch Michael for a week before his own vacation so Michael can stay home and practice on his gymnastics team,  do speech therapy, and another group class.  With John's schedule,  childcare is not straight forward, so this is HUGE for us and a blessing to Michael.  Number 5,  collision damage loss waiver insurance on a credit card that I didn't know about and used to pay for the rental car which paid for hail damage to our rental car.  The same day we got socked with a foot of snow in MN,  we got a huge hailstorm in Texas which inflicted those small dents on the rental car.  There are countless  things that we have been graced with that I haven't written about,  including being able to spend time with siblings, and appreciating the gifts we have to offer during this time.   Yes,  we are not forsaken,  but have much to be thankful for. We continue to covet your prayers.  

Cyberknife

So yesterday was the day for the 1st of 5 Cyberknife treatments for my Dad.  This is just an amazing way of delivering extremely high doses of radiation with pinpoint accuracy.  It has been around since 2007 but most of the applications were with brain tumors.  It is now being used for tumors all over the body,  primary as well as metastatic.  The big downside is while it has high success for killing the tumors,  it cannot do anything about preventing the spread,  so it is not curative by itself.  It is often combined with chemo or other adjuvant therapies for cures.   It is a good option because instead of a month of radiation appointments,  it is delivered in 1-5 doses dependant on size and type of tumor.

The radiation oncologists chose to do 5 doses,  42 minutes a piece delivered on 5 days-Tues/Thurs followed by Mon-Wed-Friday next week.  Although it takes 42 minutes to deliver the radiation,  the actual time can be up to 2 hours because the machine only fires when the tumor is in the correct place.  Patrick Swayze in 2009 underwent these treatments for pancreatic cancer and it extended his life about 14 months, in which he was able to go back to work.  His tumor had already metastasized to the liver so the cancer had already started spreading prior to the treatment.  We are thankful that the most recent knowledge we have is that Dad's tumor has been localized.  Only God knows the number of his days so we trust Him for what the future holds.

My father has elected NOT to do chemotherapy.  Truth be told,  chemotherapy can hurt as much as it helps.  It destroys the immune system,  which is what is needed to fight the cancer in the first place.  Also,  some of the medication given to help with the side effects on top also suppress the immune system.  It is a big catch 22.  We are so thankful that we have a powerful, loving God who controls all things, and uses what He wills to accomplish His will.  My Dad has been using some alternative measures to help fight the cancer.  He chose Cyberknife because of the number of treatments and no need to do anything special but lay down in his normal clothing for a few hours.

His palliative care team is phenomenal.  Compassionate and caring,  they work to provide him the best quality of life as he has elected not to do conventional treatment.  Since the last time I was in Plano,  he has been up and doing small tasks around the house, and eating more.  He also went shopping and ate out at a restaurant.  This has been with the help of medication prescribed by the team.  He still cannot drive since he has narcotics on board.

Today,  my Dad is doing well after his first treatment.  For the 1st time in a few days he had to take a breakthrough pain medication however.    We are told he will get more tired as the therapy progresses as it has a cumulative effect,  side effects usually starting after the 3rd or 4th treatment.  I remember this happening with my Mom after her radiation treatments,  she got really weak before getting better.   They told us the effects feel like the flu and that means the treatment is actually working as the body fights the interleukins released by the body to deal with the cancer cells dying.

Right now he has an IV of normal saline running.  My Dad says it is like being in the hospital with me here.  He has his own personal hospital nurse to monitor him and decide what to do.  I was made for such a time as this.   I started his IV a yesterday as he was a bit dry, and it was a bit of a challenge as he was dehydrated and he had started taking a steroid.  It is good to know that my training has not gone away,  especially since I last started IV's 9 years ago.  I wish all cancer patients could have this kind of care at home, although my Dad has a home health nurse,  2 10 minute visits a week really doesn't give you the real story.  Of course,  not all patients need this type of care,  my Dad is just one who does, and the Lord provided.

My family has had its own personal struggles as life as changed.  I hope to post on my kids in the future as we would really appreciate prayer for them as well.

RISEN

My Dad felt so much better on Sunday, March 13th(daylight savings time)  that we all went to see RISEN at a movie theatre with reclining seats.  My sister, Dad and Stepmom,  my 2 kids and I all enjoyed it.  We all needed the message about how powerful and incredible it is that we are so loved and known by God.  One of my favorite movie lines-spoiler-Jesus speaking-"that you would not see death today."  Yes, I could write something deep,  but God has given us grace for when that kind of deep thought is just too exhausting for those already emotionally spent.  It is enough to bask in His grace that He has already supplied for this time, He expects nothing but to acknowledge that He has our back, He is in charge and has our good intended for every moment of our lives,  whether we are diligently using the skills He has gifted us,  or resting in the love He has provided us to be still...Blessed be the name of the Lord.

I was going to fill you in from the last time which was about February 15th and we saw the oncologist.  Well,  on Feb 17th in the wee hours of the morning my Dad decided he could no longer bear the foley cath.  So we took a little 3 am visit to the ER to have it removed.  It was a bit of a skirmish,  I knew he should have it but I also knew it was very uncomfortable to have one from my experience with one 3 years ago.  I knew how to do it,  it was a matter of principle and also a matter of comfort.   Again,  the battle between being a daughter and nurse.  We also continued to have battles over blood pressure medication.  As an anesthesiologist, my Dad was used to STAT iv medications whose onset was immediate showing good results.  That meant pain relief in a timely manner as well as blood pressure control.  Well,  PO(per oral or tablets/capsules) take 30 - 40 minutes,  and blood pressure meds can take up to a week to achieve acceptable numbers.  So lots of  "discussions" that emotionally drained me.  John had gone home to work and my sister also went home.  At this time,  my Dad's pancreatitis still had not completely healed and he complained about excruciating pain. My Dad is not a complainer,  so this was really, really bad.   I was up every 3 hours making sure he got his pain medicine as he would tell my stepmom he didn't want it and she complied.  Well,  the nurse in me knew better,  get behind and never catch up on the pain.  I also didn't take guff from patients so there I was being the nurse again and not the daughter. I felt like I had a baby in the house again requiring food or diapering in the night.  Unlike the baby though, where there is so much hope for the future,  I was being drained watching my Dad weakening to need this type of care.  I also needed to take my Dad's blood pressure  4 times a day to titrate his medication.   I must have sounded desperate in my texts to my siblings with updates on Dad,  that my sister came back down the 18th.  Just 2 days at home.  I was glad to see her yet sad she didn't have a longer break.   My brothers weren't  able to come until the weekend of the 26th because of work schedule.  My Dad had also requested their presence.  I quickly called Dad's primary care doctor about obtaining home health services, knowing that he would need medical attention if I were not present.  I also got a prescription for straight catheters,  so we wouldn't be frequenting the ER for that issue because narcotic use can cause a neurogenic bladder.

Rest and support came through a visit to the Palliative and Supportive Care doctor/ANP on the 19th of February.  Erika is fabulous,  and another small grace-she had gone to Gustavus Adolphus in MN and had lived in St. Peter where John and I had lived for 2 years.  She is able to provide comfort and care in helping my Dad to feel his best in whatever time the Lord has for him.  Although my Dad is doing Cyberknife therapy,  it is not considered curative, but palliative in nature,  maybe prolonging his time here on earth and taking away the pain from the cancer so he can function "normally", till it is his time.  Everyone felt so much better after this visit, as the last few weeks had been hard emotionally, physically, and mentally for all of us.  

Dad became more stable medically so I was able to get home on the 22nd for a couple of days to celebrate Michael's 9th birthday.  He had been home with his Dad and some really wonderful friends so that he had some semblance of  normal life.  This has been incredibly hard on him,  so much so that he is having a crisis of faith.  We would covet your prayers that his spirit would be lifted to know that the Lord indeed is good.

I returned to Texas on the 24th of February.  The home health nurse had come to visit by that time and again,  the Lord had more blessing for us.  The nurse was a Filipina and able to speak my Dad's native language.   It made my Dad feel so much better.  As an aside,  as a Minnesotan,  I realized just how "white"  Minnesota is.  There are far more ethnic people here in Plano, Texas and I didn't realize how much it makes a difference for me.  Very subtle,  but yes,  I guess it is a subconscious feeling I have deep down inside me.  Even my children notice it and they really haven't been brought up to feel sensitive about it.

Anyway,  no sooner than I returned my Dad had bouts of urinary retention again. We tried to straight cath him which only returned blood clots and zero urine.    That brought us back to this little ER near us,  again, a simple grace but oh such a part of the plan to bring me glimpses that the Lord is truly taking care of us.  They place another foley catheter that night.  The next morning that foley cath was full of blood,  back to the ER again.  This time they admitted my Dad, and since it is a free standing ER he caught a ride in an ambulance to the hospital.  My oldest brother had just flown in and my Dad requested he accompany him to the hospital.

At the hospital we encountered the problem of getting his pain meds ordered as the hospitalist had not seen him in 3 hours since admission.  Apparently the nurse was calling the wrong hospitalist and never had her calls returned.  It was pushing the limits of my Dad's medication time so I broke the hospital rule and gave him his own medicine.  I dislike the thought of people who do not understand this and have to suffer waiting for policies to be carried out.  Note to those who are on pain medication or something that makes you feel better-always bring it with you if you can.   Even if it is just one pill...

We met one of the nicest urologists who came to care for my Dad's hematuria(bloody urine).  He was also kind and compassionate and very personable.  A rarity for those who choose this specialty.  He irrigated the catheter and we had instructions to leave it in for a few days as he thought it was trauma from the placement of the catheter.  Dad was able to go home after his one night stay at the hospital..whew...

On our 13th Wedding Anniversary, John and Michael flew back in.  John was off the week thanks to some quick schedule changes.  Although we were together,  we didn't have much time to celebrate this year:(  It was great to have him here.

The next 2 weeks were filled with appointments up to the marker placement on March 11th.  Home health,  physical therapy evaluations, the urologist and a cystoscopy that confrimed catheter trauma, another oncologist who would be closer to my Dad's house.  We obtained hydration services from him, as the radiation will further dehydrate my Dad and he should be hydrated to obtain the best outcome from radiosurgery.

I was a bit stressed about the marker placement on the 11th.   I have trauma from my own experiences with interventional radiology.  After he was stable on Friday,  I crashed from exhaustion.   When he was doing well on the weekend we celebrated with the movie RISEN.

So that brings us to today.  Another visit and labs from the the Palliative care team. Breakthrough pain medicine down from 8 times a day to once or twice a day.  My Dad is currently on a pain patch.
My Dad trying to eat.  My niece Sarah visiting on her spring break from the University of Minnesota.

Tomorrow my Dad has his mapping CT for the radiosurgery.  Wednesday morning my kids, dogs, and I fly home for a break.  Then we come back again Easter week as Dad will most likely be scheduled for radiosurgery that week.  

He is RISEN indeed!

Changing of the Guard

Yes,  it's been a while.  But there has been a life changing event also known as "the call."  We live day to day thinking our world will be the same tomorrow but in a blink of an eye, one phone call can change the trajectory of our lives.  On January 21st, 2016, my Dad telephones and tells us they found a mass on a CT scan,  can you and John please take a look at the report?  Oh my,  it says there is a mass on the pancreas which surrounds the celiac plexus.  As medical people, my husbands and my first thoughts are, ok, let's check it out.  Could be bad, could be something he has had all his life.  My Dad's primary is urging him to get a surgeon to look at it and get an open biopsy because the position says it is impossible to get a closed percutaneous biopsy.  My experience as a GI nurse says no,  see a Gastroenterologist, and my husband and I had a disagreement on how to best approach this.  John is an excellent doctor, but, when someone has been working in a specialty, they have knowledge and experience that others may not have, so I said I bet a GI doc could get a biopsy without opening my Dad up.   My Dad is a retired anesthesiologist/general practitioner.  He has had experience in the past seeing patients opened up resulting in bad outcomes like the cancer spreading like wildfire after an open operation.  He is also 86 years old and incredibly strongly opinionated.  His initial response is this is not cancer it is in a strange place.  However, he agreed to go the GI doc because he was also having issues with abdominal pain, again not in the right place to indicate pancreatic cancer, and also diarrhea.  My Dad was hyper, concerned, and anxious during this time.

So I began the search for a GI doc in Texas.  I googled many GI specialists and finally found one that I thought could help my Dad.  On January 29th, John was able to secure an appointment to see Dr. Rendon in McKinney, Texas.  My kids and I flew down on Wednesday, January 27th, finding incredible deals on airfare through an app called Skyscanner(126 roundtrip on American to Dallas) and John flew in the next week for 3 days on a similarly priced airfare.  My sister also came down because of the nature of the situation.  Dr. Rendon is an incredibly kind and knowledgeable physician, who said he would definitely be able to help my Dad figure out what this mass was.  He ordered labs which included cancer markers C19-9 used for pancreatic tumors, C 125, and CEA.  He also checked pancreatic enzymes.  All came back negative.  An MRI was also scheduled the next week to get a more detailed look at the mass.  During this time, my Dad's mood improved considerably as the cancer markers came back negative and the MRI showed the same thing and no other suspicious lesions elsewhere in the body.  We went out to  celebrate John's birthday at Texas de Brazil as everyone's mood was lightened.  It was a good time.

An EUS(endoscopic ultrasound) was scheduled for Feb 11th, 2016 to have a look.  If the lesion looked suspicious, Dr. Rendon would do a biopsy.  So, John, the kids and I flew home on Feb 3rd while my sister stayed on to help my Dad and stepmom out.  My stepmother is a native Filipina, who is not comfortable with English, American ways, and does not drive.  She has a license but hasn't driven in 12 years.  She married my Dad, in 2002, after my Mom passed away from breast cancer in February 2000.  My parents have lived in Texas and the Philippines during their marriage, as my Dad has a home in the Philippines also, which we have been able to visit a couple of times.  It was God's providence that they were stateside when Dad's symptoms occurred.   My stepmom was a wreck during this time.  The unknown has always been the most frightening, anxiety producing state for most people,  I am so glad my sister was able to stay and provide joy and support during this time with her good sense of humor.

On February 10th I flew back down with my 2 home educated children and went to my Dad's ultrasound the following day, the 11th.   I was surprised at how much thinner he looked than 10 days prior,  my sister said he had not eaten or drank much in the previous days.  She also said he started to take pain medicine, which he hadn't previously.   God's grace has always been upon this as our anesthesiologist for the procedure was a Vietnamese man who has dealt with elderly patients and understood the Asian family dynamics.   My father has had blood pressure problems ever since I could remember plus he is narcotic naive, meaning his response to anesthesia is immediate and long lasting.  The doc used half the propofol of what he used for other patients and said he enjoyed the challenge, he found giving more caused a little irritation to my Dad's 86 year old heart.  Dr. Rendon came out and gave us the hard news,  the mass indeed looked cancerous and now they had pathology right there able to do a preliminary biopsy indicating pancreatic adenocarcinoma.  Both of these physicians compassion during this time was phenomenal,  it helped to soften the blow.  Dr. Rendon immediately gave us an oncologist to follow up with.  He wanted to give the tumor a stage 2, but because it had spread to the celiac plexus(the main arteries behind the digestive system) he had to give it a 4.  So it became T4 N0 M0,  meaning no node involvement nor metastasis.    My father was somewhat in a shocked state,  whether it was because of the anesthesia, complaining more of pain than what he usually had been.  He went home at 4:30 and went right to bed.  Everyone was melancholy,  we knew there was a good possibility of this happening, but the heaviness came upon the household.

In the next 24 hours as I walked around in a daze,  my Dad became increasingly weaker and kept asking for more pain meds.  I didn't know whether it was because he was facing this diagnosis that he was requesting it more.   My nurse background came in and I said he needed to walk because of gas from the scope and I walked him around the house.  I spoke with him some and he said,  "Why of all cancers did it have to be pancreatic?" I just said,  "I am sorry." (if you google pancreatic cancer you will find that the prognosis is very poor)  He has been really a pillar during this time,  stating to us,  you know I have to die sometime, and acknowledging the Lord's will for his time on earth.  He never complained and handled his pain well.  We knew it had to be bothering him to finally do something about it.  He was very gentle to me that day and called me anak, which was his endearing term in Tagalog for me.   It really hurt to see my Dad,  whose life hasn't been particularly an easy one,  have to deal with this devastating blow.  As I walked him I  felt his forehead and he felt incredibly warm.  I remember earlier in the day thinking he felt warm but it didn't click with me.  Suddenly red flags started buzzing in my head and I took his temperature and did a more thorough assessment of his pain,   not the usual pain but deep.  It was 101.2...I quickly called John who was home in MN to tell him of his condition but while I was doing it I was looking for the GI docs number.  John confirmed that he had to be seen.  I called the GI doc and within 10 ten minutes she called back and I told the PA on call what was happening.  A minute later, after calling the Dr. Rendon, she called right back and told me she was phoning the Emergency Room to bring him in not guaranteeing we would have a short wait.  We packed him up and inside I was kicking my self for not assessing him earlier, I was being the daughter and not the nurse...that was at 7 pm.  It was also the anniversary day of my Mom's death 16 years ago.

We arrived at the ER and I told my Dad who was perfectly capable of walking that he had to pretend he couldn't walk because of the pain.  This is not to be abused as my Dad truly did have extreme pain and didn't feel good, but I knew that this would guarantee him a room right way, or at least a gurney.  He reluctantly agreed as he was uncomfortable enough not to want to wait for a bed.  We were ushered in immediately.  Labs were performed, an IV started.  Dad had pancreatitis,  acute renal failure, and hypokalemia.  The pancreatitis was a complication of the biopsy.  The renal failure was starting as organs start shutting down because of the pancreatitis.    The hypokalemia occurred because he has always been potassium deficient and didn't like to take his potassium... He was admitted.  We didn't get a bed till 130 am and the diagnosis came back at 11 pm.  The care in Texas is a little different than the care in Minnesota...

My Dad's hospitalization was a lesson in patience, compassion, grief, and trust in God for all things.  Understandably,  he was angry, and wanted to be in control.  Cancer is like that,  it immediately strips the patient of any sense of control.  I saw the retired doctor come out of him as he started to disagree with the care he was given.  He was actually right,  the hospitalist he was assigned to wasn't the brightest in the bunch. His nurses were fantastic however and provided him the care he needed working within their scope of practice.  My cousin and my Aunt who recently lost her husband, my Uncle, came to visit and my Dad broke down in self pity.  I sat and watched silently,  asking God for help moment to moment.  My sister and I took turns staying at the hospital,  my stepmom, who at this time was utterly exhausted and terrified, continuously and faithfully stayed by my Dad's side.  On one occasion while I was taking a break,  my Dad had a pain control issue.   The poor nurse took the brunt of it.  He started barking orders like he as a doctor at one point saying angrily at the nurse,  "do you not understand what stat means?"  Our East African nurse handled it well, and she explained the new system of pain care delivery to me after this event.   She wished she could have taken orders from him.  She was patient in explaining what has occurred in patient care since I haven't worked outside the home for awhile.   I have been out of nursing  practice for 11 years and I do not like the new changes in patient care that have occurred since then.  Let me say it is not for the benefit of the patient...on the 14th, Valentines Day, my husband flew in.  What a testimony to true love and one of my all time favorite Valentine's day gifts was for him to come stay with me overnight in the hospital caring for my Dad.

Dad recovered nicely and was discharged on the 15th, he was requiring pain medication every 4 hours.  My sister went home that day as she hadn't been home since January 26th.  She has 5 children and a husband to tend to also.   The morning of the 16th he awoke us all 0730 and said he could not urinate.  It was a quick trip to the ER where they placed a foley catheter.  He was having increasing pain and they gave him one pain pill.  It was then that we discovered that one normal dose of vicodin snowed him. He was on a half dose at home.   His sats dropped to 87% and he was hardly rousable.  We did manage to rouse him to make his oncology appointment at 11 am.  At the appointment he woke up enough to give his family history of 10 brothers and sisters, if they were alive and what did they die of...it was then that the oncologist said that if he didn't do anything his prognosis was 6 months...my sweetest, John, had tears streaming down his face,  everyone else was too numb...

John left early Wednesday morning and took Michael home with him.  God graciously provided care for Michael to attend coop and a class on Thursday and stay in Minnesota for a few days.  I kept Phoebe with me. She has been a blessing for me even though it has been difficult for both of us.   That afternoon we met with a radiation oncologist,  Dr. Raj Dahiya, about Cyberknife therapy for Dad.   My Dad knew that he wanted this treatment immediately versus chemotherapy or photon therapy.  http://www.cyberknife.com/cyberknife-overview/what-cyberknife.aspx?langtype=1033
It took some time to find a hospital that takes Dad's insurance to do the marker placement,  (the hospital Dr. Dahiya uses did not contract with Dad's insurance,  it confuses me as he has medicare and I thought every hospital had to take medicare but I guess it depends on what you have for part D???)  This takes us almost to where we are presently in my Dad's care.  I will write more in the next post the 2 weeks I haven't yet written about it.

The time has come in my family for the Changing of the Guard.  As my parents are having difficulty caring for themselves,  the responsibility and care have now become our role. I have had this happen before when my Mother battled cancer which had metastasized to the brain 16 years ago.  I was single then and it was much different.    My parents spent years of their life loving and caring and sacrificing for us to become who we are. It is now time to honor them as they have become dependent during this time.  I am acutely aware we are walking in the shadow of death compared to others in our journey of life.  I have felt carried by God's hand and witnessed small graces along the way.  I will share those along the way for those who wish to follow this journey.