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.