Saturday, September 24, 2016

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.

Thursday, September 15, 2016

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...