..And so, we wait.
Terry's made some decisions about his medical team that are taking valuable time. In fact, I have disagreed with several of his choices, but they are exactly that. His choices. He has chosen to return to Mayo Clinic for his care, but that means re-establishing ourselves with a medical team we haven't spoken to in many months. It also means we must jump through certain hoops all over again.
Our experience a few weeks ago with a collapsed lung due to pleural effusion told us that the problem would recur unless he had a drain tube placed in his chest or a pleurodesis. I found a fantastic thoracic surgeon at Mayo clinic with whom we consulted on Monday, but Terry decided against the procedure in favor of the drain tube. To get this installed, we must wait to see our former oncologist at Mayo. It's probably the best choice, considering his frailty, but he's had to endure two more thoracentesis (lung tap) procedures so far, and I am fairly sure I'll be taking him to the ER for another one tomorrow. Meanwhile.. Tick , tick...
I have to agree that Mayo Clinic is the best environment for his care, but we should have kept them apprised all along instead of basically walking away from them to pursue alternative therapies. Now, without an existing relationship, no doctor is particularly interested in prescribing medicine or ordering procedures until they re-establish and evaluate Terry. It makes sense, of course, and places us squarely at their mercy. Perhaps we should have done things differently. We really need a champion who specializes in head and neck cancer that gives a shit about him, and all we have is a long list of specialists who treated Terry until he decided to try something else.
Excepting quad-shot radiation to his face and neck, not one of the treatments we tried have made much of a difference. One year after his prognosis of 'about a year', here we are. He promised that Terry would die - not from the parotid gland adenocarcinoma, but complications from lung cancer. I so want to prove him wrong.
One doctor that I really lobbied for made Terry angry when he said, "so, you stopped chemo ten weeks ago. Tell me, why did you give up?". He went on to order an immediate PET scan, after which, he would meet with us again to 'make a battle plan'. The question offended T so much that he refused to go back to this man. This, the only cancer specialist willing to move immediately, ..... the only doctor who spoke to us like Terry had a fighting chance and offered cutting edge technology at a brand new facility downtown. I was elated, nearly skipping down the hall as we left the building. A few days later, Terry decided to go back to Mayo, walking away from even the PET scan Dr. Savvides had offered. Me? Stunned silent. ...Tick, tick. When I tried, he would not be persuaded.
I fear that the good, albeit abrasive, doctor was right. Perhaps Terry did give up - without me even realizing it. Either way, he has no idea how horrible the next month or so is likely to be.
Today, I finally agreed to go look at a new Fiat that we certainly cannot afford at the moment. Completely exhausted as Terry was, he insisted on buying and working the financing out immediately. Hours later as I was driving it home, I tried to feel excited about owning a brand new car for the first time in my life. I should be over the moon, but I'm just not. Cute as it is, I don't want a new car. All I want for every Christmas for the rest of my life is my husband. I want to know his every quirk, watch him turn into a grouchy old fart and die with him at my bedside in about thirty years. I'd love to just have the opportunity to care for him for awhile longer.
Knowing the estate has to pay off his outstanding debt, he signed all the documents after negotiating a lower rate; knowing he wouldn't have to worry about the monthly payments for long. Mom had come along, giving me sorrowful glances as car salesmen flitted around us. Everything is positively surreal.
Our experience a few weeks ago with a collapsed lung due to pleural effusion told us that the problem would recur unless he had a drain tube placed in his chest or a pleurodesis. I found a fantastic thoracic surgeon at Mayo clinic with whom we consulted on Monday, but Terry decided against the procedure in favor of the drain tube. To get this installed, we must wait to see our former oncologist at Mayo. It's probably the best choice, considering his frailty, but he's had to endure two more thoracentesis (lung tap) procedures so far, and I am fairly sure I'll be taking him to the ER for another one tomorrow. Meanwhile.. Tick , tick...
Scattered approach: an epic fail?
 |
| Sick of filling out 'new patient' forms... |
I have to agree that Mayo Clinic is the best environment for his care, but we should have kept them apprised all along instead of basically walking away from them to pursue alternative therapies. Now, without an existing relationship, no doctor is particularly interested in prescribing medicine or ordering procedures until they re-establish and evaluate Terry. It makes sense, of course, and places us squarely at their mercy. Perhaps we should have done things differently. We really need a champion who specializes in head and neck cancer that gives a shit about him, and all we have is a long list of specialists who treated Terry until he decided to try something else.
Excepting quad-shot radiation to his face and neck, not one of the treatments we tried have made much of a difference. One year after his prognosis of 'about a year', here we are. He promised that Terry would die - not from the parotid gland adenocarcinoma, but complications from lung cancer. I so want to prove him wrong.
One doctor that I really lobbied for made Terry angry when he said, "so, you stopped chemo ten weeks ago. Tell me, why did you give up?". He went on to order an immediate PET scan, after which, he would meet with us again to 'make a battle plan'. The question offended T so much that he refused to go back to this man. This, the only cancer specialist willing to move immediately, ..... the only doctor who spoke to us like Terry had a fighting chance and offered cutting edge technology at a brand new facility downtown. I was elated, nearly skipping down the hall as we left the building. A few days later, Terry decided to go back to Mayo, walking away from even the PET scan Dr. Savvides had offered. Me? Stunned silent. ...Tick, tick. When I tried, he would not be persuaded.
I fear that the good, albeit abrasive, doctor was right. Perhaps Terry did give up - without me even realizing it. Either way, he has no idea how horrible the next month or so is likely to be.
Bargaining - about everything else.
Today, I finally agreed to go look at a new Fiat that we certainly cannot afford at the moment. Completely exhausted as Terry was, he insisted on buying and working the financing out immediately. Hours later as I was driving it home, I tried to feel excited about owning a brand new car for the first time in my life. I should be over the moon, but I'm just not. Cute as it is, I don't want a new car. All I want for every Christmas for the rest of my life is my husband. I want to know his every quirk, watch him turn into a grouchy old fart and die with him at my bedside in about thirty years. I'd love to just have the opportunity to care for him for awhile longer.
Knowing the estate has to pay off his outstanding debt, he signed all the documents after negotiating a lower rate; knowing he wouldn't have to worry about the monthly payments for long. Mom had come along, giving me sorrowful glances as car salesmen flitted around us. Everything is positively surreal.
Suffering
He is wasting away, so thin that I literally have to be bedside to discern between his frail body under the covers and just a wrinkle in our bedspread.. His shoulders and spine jut out, and his neck is beginning to resemble that of a cartoon buzzard. Arms that were strong just a few weeks ago are now flaccid, fragile skin-covered bones that feel as if they'll break under the slightest strain. He puts them around me anyway, and I press into him, gingerly, not wanting to ever let go. ...Tick, tick.There are other things- pressing ones- going on that merit attention, but I cannot turn away. Not in body or in mind. I am transfixed, holding my breath. Waiting for the other shoe....
I wonder how close we are to the end. He is barely eating - possibly a signal that his body is shutting down. He has a new type of overwhelming exhaustion that I really cannot comprehend. He wakes to tell me how tired he feels, and fades off again. Come back, love. Fight. I cannot do it for you.
Taking care of business
What he considered to be handled a year ago was nowhere near completion. So, this past week, I had to edit and revise his will, healthcare directive and power of attorney. Our lawyer needs a few weeks to complete the official documents along with the trust Terry and his ex set up for the kids. Uncertain we have that much time, I had two witnesses sign off on my version of these fully executed documents. The whole process made me nauseous and sleepless for days. I can't believe he neglected these things for so long, but I think he believed he'd get better somehow.
Once that ordeal was over, we headed to the cemetery to look at plots and financing. ...Horrible. I made him list who he'd want by his side at the moment of death. ...Gruesome. He and I discussed outstanding loans, credit cards, custody arrangements for the kids, mortgage payments and various other debts and contracts. ...Tortuous.
Leaving this til now was a big mistake. I felt like a gold-digging materialistic scumbag forcing him to face these things, but could not allow myself to be uninformed and unprotected. I am determined to serve him by carrying out his every wish, and now I finally know how to take care of him until the very end.
All I need to do now is figure out how to get through the event itself, the societal obligations afterward and then close down all the carefully laid tendrils that remain of his life. If I emerge from these things with my sanity in tact, I intend to wander for awhile and keep only my memories as company.
I cannot imagine this world without Terry in it. Rather, I imagine it as a very cold, grey place.
