I arrived around 11:40 a.m. this morning to find John battling some pretty extreme nausea and "stomach distress." Unfortunately, my mom and brother had come up from Seattle and neighbors Bruce and Laura were enroute. So I called those I could, per John's request, and asked that nobody visit today. First time that's happened. I think it's a combination of a busy visit day yesterday (Saturday) and the disease's progression. I intercepted my mom and brother at the front door of Hospice House, along with some of John's wine tasting buddies from his "LMH Tasting" group, and had to turn them away. (If you're reading this, I'm so sorry and I KNOW you understand...I gave John a hug from each of you -- yes, even you brother Rob!)
Friends Pam and Shannon came up yesterday afternoon and spent the night with me. Something else unfortunate was that Shannon became ill (perhaps too much beer?), so they were heading home without a visit with John, too.
Weekends are good days to visit for most people. But I've been asked to pass on that it might be best for John to limit not only the number of people in his room at one time, but the length of visiting time as well. I feel like a real bitch, but it's becoming apparent that John is tiring more easily and the cancer is making itself known more and more each day.
Your calls, visits and support mean so much. May I ask that you call the front desk at Hospice House before coming to see John. (I'm not putting the phone number in this blog since it is a "public" space. Thank goodness for "Google," right?)
And so the journey continues. I think I can see an end which I both dread and long for. For those of you who have lost friends or loved ones to cancer, I know you understand. These roads are tortuous, filled with days of hope and despair. The heartbreak of seeing someone you dearly love suffer is physically painful and emotionally emptying. It is my hope that John will not suffer any more; that he'll find peace and calm, and know that he is loved. I could not greet each day without you all holding my hand and your holding John in your arms....Bless you...Nancy
Sunday, January 29, 2012
Tuesday, January 24, 2012
Time Passes
Kitties came back home Friday and I have been receiving inquiries from hospice staff as to when they'll be returning. Token was a hit with everyone (no surprise); Abigail was like his "bling" accessory.
I don't have much to report other than John continues to get more frail. He's eating only about 1-1/2 cups of fruit (raspberries/grapes/canned pears/canned apricots) each day. His weight (I would estimate) is around 165 lbs...a far cry from his hearty 260 a year ago.
I am spending my days at hospice. Visitors -- bless you all -- come and go. It's easier when others are there, providing distracting conversation from the obvious topic. I remember when John and I were heading south toward California (Disneyland to be precise) on our honeymoon. We both were delighted in the fact that we always seemed to have so much to talk about...books, movies, favorite activities, college and high school stories, philosophy, religion, history, politics...We were convinced that we'd never run out of things to say to each other. Now it seems that we've said it all. Except we never can say "I love you" enough. Or else we dance around the topic of dying. John asked me today who the funeral home was that I made his arrangements through. I told him, "Moles on Lakeway." Then someone came in (either a nurse or visitor) and spared us the rest. By the way, I think "Moles" is kind of a weird name for a funeral home, don't you? I mean, cemeteries and all...
One thing I would like to say is, once again sounding trite, thank you. Thank you to everyone who continues to send cards, provide food, send prayers, emails (I don't always have time to write back but please know I read and treasure each one), friendship and support...Our journey is enriched and made bearable by it all. You are forever in my heart...Nancy
I don't have much to report other than John continues to get more frail. He's eating only about 1-1/2 cups of fruit (raspberries/grapes/canned pears/canned apricots) each day. His weight (I would estimate) is around 165 lbs...a far cry from his hearty 260 a year ago.
I am spending my days at hospice. Visitors -- bless you all -- come and go. It's easier when others are there, providing distracting conversation from the obvious topic. I remember when John and I were heading south toward California (Disneyland to be precise) on our honeymoon. We both were delighted in the fact that we always seemed to have so much to talk about...books, movies, favorite activities, college and high school stories, philosophy, religion, history, politics...We were convinced that we'd never run out of things to say to each other. Now it seems that we've said it all. Except we never can say "I love you" enough. Or else we dance around the topic of dying. John asked me today who the funeral home was that I made his arrangements through. I told him, "Moles on Lakeway." Then someone came in (either a nurse or visitor) and spared us the rest. By the way, I think "Moles" is kind of a weird name for a funeral home, don't you? I mean, cemeteries and all...
One thing I would like to say is, once again sounding trite, thank you. Thank you to everyone who continues to send cards, provide food, send prayers, emails (I don't always have time to write back but please know I read and treasure each one), friendship and support...Our journey is enriched and made bearable by it all. You are forever in my heart...Nancy
Friday, January 20, 2012
Getting Un-Snowed
John is progressing along his journey. They have upped his pain meds from 5mg to 10mg per dose to keep the pain at bay. This makes him groggy and even more sleepy than he would normally be at this stage. He is on a regular med schedule in an effort to control his nausea which seems to be working. His appetite, however, is non-existent. He eats only fruit (grapes/raspberries/canned pears) and drinks some grape juice or water. He'll ask for tea, but only takes a sip or two.
I'm taking the cats home this afternoon after four nights at Hospice House. This has been an enlightening experience for me as I've come to know some of the other families who are on the same path. It's rather odd to think about staying here, living here, with the cats this week. People who come to hospice are either in a transition in need of respite care before returning home or on to another facility, or they are dying. John's neighbors are both in the final stages of life; Kristin (Token's "patient") and Jemimah (real name Maureen). I had the honor of visiting Jemimah last night. I've come to know her husband, Tom, and sister, Pat, this week. Jemimah is not awake or responsive, but I introduced myself and told her about John. I also said that I was pleased to meet her husband and sister, and that I know they both love her very, very much. I know she heard me and appreciated my visit.
So Token, Abigail and I have been "living" with death. I've come to realize that dying itself is actually life. A part of this life and a beginning of a new one. Death should not be feared...I actually think birth is tougher than dying. You come into this world alone, not knowing anyone. Sure you (hopefully) have parents who will take care of you, love you...and you get to know and love them. But you still come into an unknown world, not knowing anyone or anything. Then you live your life, make friends, fall in love, form relationships. That's what makes dying hard. You have to say goodbye to loved ones.
But the hardest thing of all is being left behind. And that fear of abandonment and loss is what binds those of us who have lived here this week during the snow. Together we share this most personal and intimate experience of this life. I may not ever see some of these people again. But they will be with me forever. They have made a difference for me. I hope I have done a little of the same for them...Onward we go...I'm holding your hands very tight now...Love and peace to you...Nancy
I'm taking the cats home this afternoon after four nights at Hospice House. This has been an enlightening experience for me as I've come to know some of the other families who are on the same path. It's rather odd to think about staying here, living here, with the cats this week. People who come to hospice are either in a transition in need of respite care before returning home or on to another facility, or they are dying. John's neighbors are both in the final stages of life; Kristin (Token's "patient") and Jemimah (real name Maureen). I had the honor of visiting Jemimah last night. I've come to know her husband, Tom, and sister, Pat, this week. Jemimah is not awake or responsive, but I introduced myself and told her about John. I also said that I was pleased to meet her husband and sister, and that I know they both love her very, very much. I know she heard me and appreciated my visit.
So Token, Abigail and I have been "living" with death. I've come to realize that dying itself is actually life. A part of this life and a beginning of a new one. Death should not be feared...I actually think birth is tougher than dying. You come into this world alone, not knowing anyone. Sure you (hopefully) have parents who will take care of you, love you...and you get to know and love them. But you still come into an unknown world, not knowing anyone or anything. Then you live your life, make friends, fall in love, form relationships. That's what makes dying hard. You have to say goodbye to loved ones.
But the hardest thing of all is being left behind. And that fear of abandonment and loss is what binds those of us who have lived here this week during the snow. Together we share this most personal and intimate experience of this life. I may not ever see some of these people again. But they will be with me forever. They have made a difference for me. I hope I have done a little of the same for them...Onward we go...I'm holding your hands very tight now...Love and peace to you...Nancy
Thursday, January 19, 2012
Another Snow Day
This morning finds snow and ice here in Whatcom County. I did some laundry last night in Hospice House's family laundry room so I have clean underwear. Yesterday, John wanted canned pears. So I ventured to the nearby Sehome Haggen and picked up pears, raspberries, two flavors of applesauce, Gatorade, grape juice and some sushi. (The sushi was for me.) Indeed it was icy! But our new Nissan Rogue handled the trip really well.
John's sleeping a lot more and not talking as much. Although when visitors or nurses come in, he perks up a little more. But changes are taking place. There have been some instances of confusion...Inability to track a football game (Green Bay/Giants); not remembering that he has dressings covering the insertion area of his nephrostomy tubes; and once a sensation of his bed tilting to the side...among others. It could be medication-related, but my instinct is saying it's cancer and the dying process. John's appetite is next-to-nil which is to be expected. Yesterday he ate a few grapes, a small cup of applesauce, a cup of mandarin oranges and a small bite of an oatmeal/chocolate chip cookie. And the worst of it was that the chocolate chips didn't taste good to him. (John is/was a chocolate freak!)
I have met some of the other families who are staying with dying relatives...Kristin (Token's "patient") and her family; local "kids"(aged 40+) who are here with their mom; Tom (from Bellingham) and sister-in-law Pat from Winnipeg who are here with Tom's wife Maureen...We are connected by the same bond of having to say goodbye to someone we love. We share stories and tears -- and the cats are getting lots of visitors, providing my fellow companions in death with comfort.
So we start another day on life's journey. The weather around here makes getting around difficult, if not impossible. So get out those jigsaw puzzles...Enjoy family time together...And, when the weather breaks, take those puzzles to a place where other families are waiting, watching and looking toward the time when they can put their lives back together. The jigsaw puzzles of our lives constantly change, never look the same, but somehow always come together as they should. Love to you all...Nancy
John's sleeping a lot more and not talking as much. Although when visitors or nurses come in, he perks up a little more. But changes are taking place. There have been some instances of confusion...Inability to track a football game (Green Bay/Giants); not remembering that he has dressings covering the insertion area of his nephrostomy tubes; and once a sensation of his bed tilting to the side...among others. It could be medication-related, but my instinct is saying it's cancer and the dying process. John's appetite is next-to-nil which is to be expected. Yesterday he ate a few grapes, a small cup of applesauce, a cup of mandarin oranges and a small bite of an oatmeal/chocolate chip cookie. And the worst of it was that the chocolate chips didn't taste good to him. (John is/was a chocolate freak!)
I have met some of the other families who are staying with dying relatives...Kristin (Token's "patient") and her family; local "kids"(aged 40+) who are here with their mom; Tom (from Bellingham) and sister-in-law Pat from Winnipeg who are here with Tom's wife Maureen...We are connected by the same bond of having to say goodbye to someone we love. We share stories and tears -- and the cats are getting lots of visitors, providing my fellow companions in death with comfort.
So we start another day on life's journey. The weather around here makes getting around difficult, if not impossible. So get out those jigsaw puzzles...Enjoy family time together...And, when the weather breaks, take those puzzles to a place where other families are waiting, watching and looking toward the time when they can put their lives back together. The jigsaw puzzles of our lives constantly change, never look the same, but somehow always come together as they should. Love to you all...Nancy
Wednesday, January 18, 2012
Snowed In
John woke up this a.m. around 6:00 with more-than-usual pain and a rather difficult bout of nausea. It's now under control and he's resting comfortably in the recliner in his room. The nursing staff here is great, and the volunteers who -- in spite of snow and ice -- continue to come to work at Hospice House. While the nurses tend to patients, the volunteers are taking care of visiting family by providing breakfast casseroles, deli plate lunches and (last night) taco salad for dinner.
I took Token for a second visit to a young lady (Kristin, 32) next door. She has small cell carcinoma. The doctors had given her a day or two about two weeks ago, but she is still alert and able to enjoy her family and friends who are her constant visitors. Her mother asked if I could bring one of the cats for a visit as Kristin has three cats of her own and loves animals. Token was the only choice as Abigail is not exactly a social butterfly in public settings. He did great! He laid calmly by Kristin's side and let her and her 3-year-old son pet him. He even purred! Such a good boy. I told Kristin maybe I should start "pimping him out" as a therapy cat.
Snow is falling, the wind is picking up and I'm sitting in the daybed by the window wondering if I'll be stuck my 2-day-old turkey sandwich for breakfast or see if one of the incredible volunteers is able to get here with something warm for us "homeless" family folk. Worst case, there is still a plate of pumpkin/chocolate chip cookies in the family lounge.
I keep hoping that this is all a bad dream. I'll wake up and John will be snoring next to me in our bed at home and I'll be wishing he'd get up to feed the cats so I can stay in bed an extra 15 minutes. But that "Dallas" episode doesn't apply to real life and I know that I'm not dreaming. I fed the cats, got my own coffee and settled in to write a note to you all. You are my strength and support right now...Thank you for helping me and thank you for loving John....Nancy
I took Token for a second visit to a young lady (Kristin, 32) next door. She has small cell carcinoma. The doctors had given her a day or two about two weeks ago, but she is still alert and able to enjoy her family and friends who are her constant visitors. Her mother asked if I could bring one of the cats for a visit as Kristin has three cats of her own and loves animals. Token was the only choice as Abigail is not exactly a social butterfly in public settings. He did great! He laid calmly by Kristin's side and let her and her 3-year-old son pet him. He even purred! Such a good boy. I told Kristin maybe I should start "pimping him out" as a therapy cat.
Snow is falling, the wind is picking up and I'm sitting in the daybed by the window wondering if I'll be stuck my 2-day-old turkey sandwich for breakfast or see if one of the incredible volunteers is able to get here with something warm for us "homeless" family folk. Worst case, there is still a plate of pumpkin/chocolate chip cookies in the family lounge.
I keep hoping that this is all a bad dream. I'll wake up and John will be snoring next to me in our bed at home and I'll be wishing he'd get up to feed the cats so I can stay in bed an extra 15 minutes. But that "Dallas" episode doesn't apply to real life and I know that I'm not dreaming. I fed the cats, got my own coffee and settled in to write a note to you all. You are my strength and support right now...Thank you for helping me and thank you for loving John....Nancy
Monday, January 16, 2012
Family Camping Trip
I'm writing to you from John's hospice room. Outside his window, snow is steadily drifting from gray skies. All is peaceful. Even the cats. Yes, you read correctly...cats. This morning, I packed up Token, Abigail, litter box, food, toys, treats, scratch mat, kitty blankets (oh, and some of my things, too) for a 2 or 3 night stay with John. Pets are welcome in patient rooms at Hospice House and "the kids" wanted to see their dad. John's having a nap; Token's starting to doze at the foot of his bed; Abigail is resting comfortably in her towel-lined carrier; and I'm enjoying a moment of calm.
John is changing. He's not eating except for a minute amount of fruit and some fluids and his nausea is almost constant albeit controlled with meds. His nephrostomy tubes are mostly clear of blood and his kidneys are still producing urine. But he is starting to feel more acute discomfort in his lower abdomen from the cancer and, today, I see a big change in his energy level -- which was already very low. They're going to try to get him in the shower this afternoon and put him in some fresh flannel PJs and t-shirt.
I love the snow. I hope when next winter's blanket of white comes, I'll be able to appreciate its beauty without heartache. Maybe this is God's way of wrapping His winter arms around us, holding us close as we near the end of this journey.
John told me a couple of nights ago that he didn't want this (his life and our life together) to end. I replied that the only thing ending is his cancer-stricken body and the pain, suffering and uselessness that accompanies it. I told John that he is just beginning. I pray that he can accept and go where he needs to go next...and wait for me. Wait for us all. It's going to be grand when we're together. Love and peace to you all...Nancy
John is changing. He's not eating except for a minute amount of fruit and some fluids and his nausea is almost constant albeit controlled with meds. His nephrostomy tubes are mostly clear of blood and his kidneys are still producing urine. But he is starting to feel more acute discomfort in his lower abdomen from the cancer and, today, I see a big change in his energy level -- which was already very low. They're going to try to get him in the shower this afternoon and put him in some fresh flannel PJs and t-shirt.
I love the snow. I hope when next winter's blanket of white comes, I'll be able to appreciate its beauty without heartache. Maybe this is God's way of wrapping His winter arms around us, holding us close as we near the end of this journey.
John told me a couple of nights ago that he didn't want this (his life and our life together) to end. I replied that the only thing ending is his cancer-stricken body and the pain, suffering and uselessness that accompanies it. I told John that he is just beginning. I pray that he can accept and go where he needs to go next...and wait for me. Wait for us all. It's going to be grand when we're together. Love and peace to you all...Nancy
Saturday, January 14, 2012
Changing Directions
John had a comfortable day at Whatcom Hospice House yesterday. Brother Ray is visiting and our dear friend (my "guardian angel" and neighbor from Bothell) Laura, who has been staying with me for a few days.
John's nephrostomy tubes -- still don't know if I'm spelling that right -- are working, although I noticed yesterday that instead of looking like "raspberry lemonade," the fluid coming out is distinctly more red. Although I'm not a medical professional, this doesn't look like a good thing to me. However, John's comfortable as they're able to keep his nausea and pain under better control.
John and I talked yesterday and it's his wish to stay at Hospice House rather than come home. He told me, "I think the house is too big." What he was saying is that if he comes home, his hospital bed and equipment would have to be in the living area (great room). He wouldn't have any personal space, people would be coming and going, and he would feel like a piece of furniture. It breaks my heart, but I believe that -- if we can work it out with our insurance and social worker -- Hospice House is the very best place John could be right now. I'll be working closely with our social worker to ensure John's wishes are met.
Our 30th wedding anniversary is coming up February 6. A few days ago when John was still in hospital, he asked his friend Rick Westover to run an errand. When I came back to John's room from lunch, there was a bag from Haggen for me. Inside was a package of Lindt Milk Chocolate Truffles, a little stuffed kitty and an anniversary card. I don't think I need to say more...
As I write, it's 8:15 a.m. Laura and I are watching the weather report -- snow is coming -- and I'm going to call Hospice House to see how John fared during the night before we leave for the day. Friend (almost-like-a-brother) Larry is flying in today from San Diego. Sister-in-law Linda and niece Danielle are coming, along with Laura's husband and John's #1 golfing buddy Bruce. It's going to be a busy weekend of visitors for John, which is good for him. Although I treasure every second I have with him, every chance I can look into his loving eyes, every time I can touch his hand...Our friends taking time for him -- for us -- are making this journey bearable. I love you all....Nancy
John's nephrostomy tubes -- still don't know if I'm spelling that right -- are working, although I noticed yesterday that instead of looking like "raspberry lemonade," the fluid coming out is distinctly more red. Although I'm not a medical professional, this doesn't look like a good thing to me. However, John's comfortable as they're able to keep his nausea and pain under better control.
John and I talked yesterday and it's his wish to stay at Hospice House rather than come home. He told me, "I think the house is too big." What he was saying is that if he comes home, his hospital bed and equipment would have to be in the living area (great room). He wouldn't have any personal space, people would be coming and going, and he would feel like a piece of furniture. It breaks my heart, but I believe that -- if we can work it out with our insurance and social worker -- Hospice House is the very best place John could be right now. I'll be working closely with our social worker to ensure John's wishes are met.
Our 30th wedding anniversary is coming up February 6. A few days ago when John was still in hospital, he asked his friend Rick Westover to run an errand. When I came back to John's room from lunch, there was a bag from Haggen for me. Inside was a package of Lindt Milk Chocolate Truffles, a little stuffed kitty and an anniversary card. I don't think I need to say more...
As I write, it's 8:15 a.m. Laura and I are watching the weather report -- snow is coming -- and I'm going to call Hospice House to see how John fared during the night before we leave for the day. Friend (almost-like-a-brother) Larry is flying in today from San Diego. Sister-in-law Linda and niece Danielle are coming, along with Laura's husband and John's #1 golfing buddy Bruce. It's going to be a busy weekend of visitors for John, which is good for him. Although I treasure every second I have with him, every chance I can look into his loving eyes, every time I can touch his hand...Our friends taking time for him -- for us -- are making this journey bearable. I love you all....Nancy
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