Monday, March 14, 2016
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!