I have been learning about death lately. I honestly never really thought there was much to it. I figured it was just "lights out" or that it was a terrible thing to see and that a dead body is creepy. That's about it. Tonight my family met with a Fairview Hospice Nurse named Jamie. He spent hours with us talking about my dad and explaining to us the dying process and the grief process. He listened. He heard our questions. He even fielded some anger from us. And graciously, he was able to identify for us where he believes my dad to be in this process. His guess..days to weeks.
And so now I have to take a long hard look at death and though I do not like the process, I am almost intrigued to learn that it IS a process. And as I learn I realize the hand of my Creator even in how He orchestrates the end of life. In a natural dying process, there is a beautiful rhythm and flow. There is order and mercy. Sadly, our heroic interventions can sometimes interrupt this order and make the process terrible for those we love. It pains me to be a spectator. I feel so helpless, always questioning if we are doing the right thing. I hurt for me, for my mom, for my kids, for my whole family. And yet, dad seems to be the one hurting the least. When my niece went to go back home tonight, dad hugged her and said, "It is only going to get better. I promise." Enough said for today.
Saturday, June 18, 2011
Thursday, June 16, 2011
Doing the right? thing
Well, my dad has been home for exactly one week as of Thursday. It is now Friday and I can't sleep just yet. Today was awful. Dad went from having a pretty normal day to not so normal to terrible. He has had continued issues with eating and some vomiting all along, but now today he vomited up his Ensure which was alarming. Then after a bout outside, he became so chilled and weak he was shaking uncontrollably. They did manage to get him to bed where he spiked a fever and we had to pile blankets on top of him while he lay there trembling and scared. The fever kept climbing and he became a bit disoriented. My first instinct is to get him to the hospital. What the heck is going on? Is it the tumor, an infection what? But he is on hospice so their advice is to give him a Tylenol and see if it will help but it might not because the cancer is likely putting his temperature control out of whack which is something that happens as a person progresses toward death. Okay, as I have said before, I am pretty well grounded in reality. I get that hospice's job is not to prolong the dying process and to just make the patient comfortable. But here is what is messing with my head. I am not sure that him even being home and on hospice is the right decision. Did he really come home to just die or did he come home with the hope of getting even a little better so he could enjoy his last days/weeks /months. It has been one freaking week and we are being prepared for his death? Inside everything is screaming that we need an opinion from the hospital end of the spectrum to see if we are doing the right thing! I want to see what is going on with the cancer. I want to know that he may just need a boost at the hospital to set things on course again. But yet I know I may not get these answers, and I also know I may just have to take the road of inaction and watch my dad just die. But to feel like the ones making the ultimate decisions to let another person dehydrate and starve seems so incredibly wrong even though I know that is often the cause of death with this type of cancer. The cancer dehydrates and sucks all of the nutrition from his body not to mention the energy and life! This just sucks! I am stuck between not knowing if we are making the right decision by having him home and not wanting to prolong the inevitable and make it potentially worse for Dad. I am just sad and confused and angry. This death and dying stuff is so easy to deal with when it doesn't hit your camp, but boy once it comes close or worse, invades, it messes with you, it changes you. I am just not able to see the positive stuff of it right now. :*(
Tuesday, May 17, 2011
Prognosis? Needing a Miracle
I posted this on my facebook and thought I would share it here as well...
Well, today was the day for dad's CT scan to see if the treatment has worked. Before the oncology team could meet, it was discovered (thanks to the CT), that he has a pulmonary embolism (blood clot in the lung). He was not having any of the major presenting symptoms, so if it were not for the CT, this would have not been discovered at least today! So that is good news. They will be treating him with shots of heparin, most likely Lovenox if my guess is right.
As for the cancer, they are saying that it does not appear that there has been any change in the tumor size. They had a hard time making a 100% definitive on that because the stent he has in place makes it a little hard to read the results, but it does not look as if it has receded. Also, they are saying that he cannot undergo any more chemotherapy because he is still medically unstable and if they do any more, they fear it would kill him. That is not to say that they can't look at this again if his condition stabilizes. One positive thing is that he is doing LESS vomiting which makes life much more comfortable for him. Eating is still a big problem, drinking goes pretty good--so they are continuing to give him nutrients through a pick line.
The really hard news is that they are saying that they expect he only has 6 months to live.
This is obviously hard. 6 months! That flies by so fast. Of course, that is not a set-in-stone timeline. Patient to patient, these things can go very differently.
Now we look at the short-term care and long-term care options. Dad REALLY wants to come home...REALLY! He has been stuck at that facility since the first part of April. He would have to be stable especially with the blood pressure drops and falling and I assume with the nutrition as well.
So your prayers are needed. This morning I only allowed myself to pray for one thing and that was for a miracle. I told God that as the day progressed if I needed to change my request I would. Now I am not sure if I should. We still need a miracle. Essentially as we have known all along, this cancer is not curable in these later stages. But God can do this. I don't know if He will, so I am needing to put one foot in front of the other and walk through this with my family. Strength is needed; grace is needed; joy is needed--it's hard to come by these days. Lorryn's death was a real shock and hit us hard. This was another hard hit for sure.
Well, today was the day for dad's CT scan to see if the treatment has worked. Before the oncology team could meet, it was discovered (thanks to the CT), that he has a pulmonary embolism (blood clot in the lung). He was not having any of the major presenting symptoms, so if it were not for the CT, this would have not been discovered at least today! So that is good news. They will be treating him with shots of heparin, most likely Lovenox if my guess is right.
As for the cancer, they are saying that it does not appear that there has been any change in the tumor size. They had a hard time making a 100% definitive on that because the stent he has in place makes it a little hard to read the results, but it does not look as if it has receded. Also, they are saying that he cannot undergo any more chemotherapy because he is still medically unstable and if they do any more, they fear it would kill him. That is not to say that they can't look at this again if his condition stabilizes. One positive thing is that he is doing LESS vomiting which makes life much more comfortable for him. Eating is still a big problem, drinking goes pretty good--so they are continuing to give him nutrients through a pick line.
The really hard news is that they are saying that they expect he only has 6 months to live.
This is obviously hard. 6 months! That flies by so fast. Of course, that is not a set-in-stone timeline. Patient to patient, these things can go very differently.
Now we look at the short-term care and long-term care options. Dad REALLY wants to come home...REALLY! He has been stuck at that facility since the first part of April. He would have to be stable especially with the blood pressure drops and falling and I assume with the nutrition as well.
So your prayers are needed. This morning I only allowed myself to pray for one thing and that was for a miracle. I told God that as the day progressed if I needed to change my request I would. Now I am not sure if I should. We still need a miracle. Essentially as we have known all along, this cancer is not curable in these later stages. But God can do this. I don't know if He will, so I am needing to put one foot in front of the other and walk through this with my family. Strength is needed; grace is needed; joy is needed--it's hard to come by these days. Lorryn's death was a real shock and hit us hard. This was another hard hit for sure.
Monday, May 16, 2011
Some things are better left unsaid
I am finding that some people really have a tough time dealing with pain and loss...or the potential of it. It is bad enough when it strikes their life and you can see the tailspin begin. But then there are those awkward moments (and we have all had them), when we face someone else's pain and loss, and we have no idea what to say, or if we should say anything at all, but yet feel that we should say something! UGH! Well I was on the receiving end of a moment like this last week...and I have had a few of those since my dad's diagnosis.
I was giving someone an update on my dad, and it was not a great update. None of them have been lately :( Anyway, the person I was talking to has been acquainted with much pain and loss in her own life and so her ability to empathize should be intact. I found out quite differently. When she heard the misery my dad was in and of course the impact it is having on me, she replied, "Well this is going to sound harsh,...but you know, he chose this! He really did!" My first instinct was to agree because I am a realist to the max. Yep, I get it...he chose to smoke in spite of the warnings. Yep, got it! But did he chose this? Really? Did he choose to gag and vomit daily? Did he choose to not be able to eat? Did he choose to essentially be starving, losing 85 lbs. in a matter of months? Did he choose to develop a pulmonary embolism? Did he choose to pass out and fall to the ground? Did he? The realist in me says yes. The daughter in me says no! No one would choose this.
Sadly, the person who said this to me is a person who ministers to people who are victim/survivors of suicide. Does she give this word of "comfort" to the families who have been abandoned to suicide? Well, they chose it, right?
Some things are better left unsaid.
I was giving someone an update on my dad, and it was not a great update. None of them have been lately :( Anyway, the person I was talking to has been acquainted with much pain and loss in her own life and so her ability to empathize should be intact. I found out quite differently. When she heard the misery my dad was in and of course the impact it is having on me, she replied, "Well this is going to sound harsh,...but you know, he chose this! He really did!" My first instinct was to agree because I am a realist to the max. Yep, I get it...he chose to smoke in spite of the warnings. Yep, got it! But did he chose this? Really? Did he choose to gag and vomit daily? Did he choose to not be able to eat? Did he choose to essentially be starving, losing 85 lbs. in a matter of months? Did he choose to develop a pulmonary embolism? Did he choose to pass out and fall to the ground? Did he? The realist in me says yes. The daughter in me says no! No one would choose this.
Sadly, the person who said this to me is a person who ministers to people who are victim/survivors of suicide. Does she give this word of "comfort" to the families who have been abandoned to suicide? Well, they chose it, right?
Some things are better left unsaid.
Tuesday, May 3, 2011
Defined
I have defined myself today. One might caution about labeling or defining oneself and I generally agree. However, sometimes I think it really helps to sit down and figure yourself out...if that is possible. So here it is, in a word (from Webster's Dictionary):
Definition of DISJOINTED
1a : being thrown out of orderly function b : lacking coherence or orderly sequence
This is me! Oh my goodness, this is me! I have days here and there where I say I am disjointed, but lately this is the rule. I feel as if I am floating from event to event, crisis to crisis, person to person, project to project. There is little sense of cohesion. I get this way when I am in crisis mode or just plain overwhelmed. And I am both.
I knew this cancer stuff was going to be a wild ride, but until you are in the thick middle of it, you cannot possibly know just how wild. Things you NEVER thought of, happen. It is a season of tremendous "unexpecteds." Unfortunately, most of them are not positive and so, you catch your breath each time the phone rings or you get an update. I know this needs to drive me deeper into the arms of my Jesus, but I am so out of focus I scarcely know how to even do that. So yes, I have pegged myself....now what?
Definition of DISJOINTED
1a : being thrown out of orderly function b : lacking coherence or orderly sequence
This is me! Oh my goodness, this is me! I have days here and there where I say I am disjointed, but lately this is the rule. I feel as if I am floating from event to event, crisis to crisis, person to person, project to project. There is little sense of cohesion. I get this way when I am in crisis mode or just plain overwhelmed. And I am both.
I knew this cancer stuff was going to be a wild ride, but until you are in the thick middle of it, you cannot possibly know just how wild. Things you NEVER thought of, happen. It is a season of tremendous "unexpecteds." Unfortunately, most of them are not positive and so, you catch your breath each time the phone rings or you get an update. I know this needs to drive me deeper into the arms of my Jesus, but I am so out of focus I scarcely know how to even do that. So yes, I have pegged myself....now what?
Saturday, April 23, 2011
How am I doing?
I looked at the date on my last post and realized that it was the day before my father-in-law Lorryn passed away. Who would have thought as I wrote that 24 hours later I would be in the throughs of grief with my family. The "circle of life" so to speak has a power to change our course dramatically within seconds.
So how am I doing? I have to stop and ask myself this frequently these days. I have walked through the valley of the shadow of death. I said goodbye to a wonderful man (who not too many years ago, I would not have attached the word "wonderful" to)! His death was a trauma--happening in the Perkins in Cambridge. Saying goodbye to a loved one is not something you picture doing on the floor of a restaurant. And yet as I stroked Lorryn's head and prayed over him, I noticed the look of absolute peace on his face and just had a sense of everything being okay and the way it is supposed to be. Strange....
And then, I stand on the edge of that same valley with my dad. It just sucks! It is unfair and at times I feel that I cannot do this. It's too much for one family to endure all at once. It is! And yet, I was singing in church a song that repeated "Where you lead me Lord I will follow."...yes, we had smiles on our faces and our hands were raised. Then the Lord spoke to me and reminded me that He leads us through that ugly valley too..would I still go with Him? Could I go through that valley again, or even soon and be okay? Could I?!! I started to cry and said that I would. I don't want to, and it is still unfair, but yes I would. Could I handle yet another funeral and make it? Yes--don't want to, but yes.
And to top it off, the day after my father-in-law's funeral was the day that our eldest member of the household thought appropriate to start a cold war. She has literally been in isolation from the whole household...not eating with us, not communicating---complete and total isolation which carries a message to us. We are unsure what the intent of her messsage is, but the one that is being sent is this--"I am so self-focused and my world is so small that I would choose to be petty and put your household under more unneeded stress while you are enduring the biggest crisis that you have EVER endured. And I am your friend????!!!" This is the message we are hearing, and it is causing a lot of stress and anger.
So that is how I am doing. Anyone care to join me?
So how am I doing? I have to stop and ask myself this frequently these days. I have walked through the valley of the shadow of death. I said goodbye to a wonderful man (who not too many years ago, I would not have attached the word "wonderful" to)! His death was a trauma--happening in the Perkins in Cambridge. Saying goodbye to a loved one is not something you picture doing on the floor of a restaurant. And yet as I stroked Lorryn's head and prayed over him, I noticed the look of absolute peace on his face and just had a sense of everything being okay and the way it is supposed to be. Strange....
And then, I stand on the edge of that same valley with my dad. It just sucks! It is unfair and at times I feel that I cannot do this. It's too much for one family to endure all at once. It is! And yet, I was singing in church a song that repeated "Where you lead me Lord I will follow."...yes, we had smiles on our faces and our hands were raised. Then the Lord spoke to me and reminded me that He leads us through that ugly valley too..would I still go with Him? Could I go through that valley again, or even soon and be okay? Could I?!! I started to cry and said that I would. I don't want to, and it is still unfair, but yes I would. Could I handle yet another funeral and make it? Yes--don't want to, but yes.
And to top it off, the day after my father-in-law's funeral was the day that our eldest member of the household thought appropriate to start a cold war. She has literally been in isolation from the whole household...not eating with us, not communicating---complete and total isolation which carries a message to us. We are unsure what the intent of her messsage is, but the one that is being sent is this--"I am so self-focused and my world is so small that I would choose to be petty and put your household under more unneeded stress while you are enduring the biggest crisis that you have EVER endured. And I am your friend????!!!" This is the message we are hearing, and it is causing a lot of stress and anger.
So that is how I am doing. Anyone care to join me?
Saturday, April 2, 2011
A Valuable Lesson
I have been stressed lately. There is plenty going on in my life that is stressful, so one might be tempted to give me permission to just let it be, and to a point I can be gracious to myself, but in this case, I can't. A core thing going on in my home is a lot of selfishness, short-sightedness and self focus..and for more than one person! And I view this, run interference, and get very frustrated! I have been frustrated all week, and I am getting really sick of the crap going on. And so, here is what I have noticed that I am doing. In response to selfishness I see in others, what have I done? Well I would like to give you a godly answer but I can't. I have responded by withholding myself in conversation and compassion---with selfishness. I have seen quite a bit of disrespect going on in the home, and so what have I done? Been a bit disrespectful myself. There are quick tempers and I have simply followed suit. Not productive at all. The very thing I see in others that disgusts me is the VERY thing I use in response to them! WOW---gee great approach Steph! I need to begin to minister in the opposite spirit, and oh man! It is so hard to do! Knee jerk for me is just not the high road unfortunately. Lord, help!
Subscribe to:
Posts (Atom)