Dear friends, I wish I could write without such a heavy heart, but unfortunately the oncologist did not have an abundance of good news to share with Mom and Dad today.
First of all, Mom and Dad asked her about the swelling in Mom's legs and abdomen. We were hoping that perhaps the oncologist might suggest a new medication to diminish the amount of excess fluid in her body. The response was that there is nothing that can really help, and the oncologist actually elected to take Mom off the diuretics altogether. Draining the fluid is not an option, either, because it is not contained in any one particular area. The "doctor lingo" to explain this condition is that Mom has "low albumin levels," which I googled and also talked to several nurses about this afternoon. Basically I think it means that her body cannot properly distribute fluids because of this condition, which is caused by the liver and kidneys failing to function at 100%. One other point to make it that the diuretics she was taking are causing other areas of her body to dry up instead of drying up her legs and abdomen, which may explain in part why her energy level is so low and why she has trouble talking for long periods of time.
Mom and Dad chose to ask a dreaded question: What does all of this mean for length of life? The doctor's answer was that it will be a matter of weeks. She advised that Mom no longer travel and instead Grant and I and our families make the trip across the state as often as we can. My hope is that God will give us as much time with Mom as possible. We are planning a trip in conjunction with my cousin Brendan's wedding to Ocean City, NJ, the first week in August. Please join us in praying that we will all have the chance to be together on the beach. And please pray for Mom's pain levels and for peace for her and for my dad.
Wednesday, June 30, 2010
Tuesday, June 29, 2010
Tomorrow's Oncologist Visit
Just a quick entry to remind you all that Mom will be seeing her oncologist tomorrow afternoon at 3:30. Please pray that she and Dad will be able to communicate clearly Mom's needs at this point and, if possible, a way of relieving some of mom's pain and swelling can be identified. Mom will also be seeking the doctor's wisdom on whether or not she can travel next week to Pittsburgh or whether we can only at this point come to visit her.
Monday, June 28, 2010
Some quiet time in Newport
Hi everyone. This is Adina writing on behalf of Deb and Will.
Last week, Deb and Will ventured to Newport Rhode Island for a get-away from Tuesday - Friday. They stayed at the Hyatt Regency on Goat Island. They turned off their cell phones and really enjoyed four days of focusing just on one another.
They enjoyed a number of outings. They visited two mansions: Breakers and Marble House; took a boat tour where they caught glimpses of Eisenhower's and Jackie Onassis' summer homes; and walked along the cliffs that ran along the back side of the mansions. They also enjoyed some quiet time at the pool and relaxing in some Adirondack chairs watching the sailboats, reading and napping. Deb and Will also enjoyed some lovely dinners together. They espcially enjoyed dinner at the Ocean Cliff Restaurant where they soaked up an incredible sunset together. The lobster wasn't bad either!
The ride home was 9 very long hours and this was tough on both Deb and Will. Since Deb's kidneys are not functioning at 100%, her legs and abdomen are swelling and she is experiencing discomfort as a result of these new symptoms along with the persistent pain of the hemroids. The nurse came today and indicated that these symptoms reflect the natural progression of the disease and there is little to be done about them. She did recommend some adjustments to the medications to help enable Deb to be more comfortable as things progress.
Overall, sitting with Deb today, I continue to be amazed that, in spite of everything, Deb's primary thoughts are of concern and care for others. She wants everything to be as easy as possible for her family, and - as always - she asks what is going on in other's lives before ever focusing on her own. Our dear friend is such a special person and it is a blessing each day to be with her.
Unfortunately, Deb's energy levels are diminshing and she is not able to return as many phone calls and text messages as before. She loves reading the posts on the blog, so this is a wonderful way to stay connected and continue to share your prayers.
Last week, Deb and Will ventured to Newport Rhode Island for a get-away from Tuesday - Friday. They stayed at the Hyatt Regency on Goat Island. They turned off their cell phones and really enjoyed four days of focusing just on one another.
They enjoyed a number of outings. They visited two mansions: Breakers and Marble House; took a boat tour where they caught glimpses of Eisenhower's and Jackie Onassis' summer homes; and walked along the cliffs that ran along the back side of the mansions. They also enjoyed some quiet time at the pool and relaxing in some Adirondack chairs watching the sailboats, reading and napping. Deb and Will also enjoyed some lovely dinners together. They espcially enjoyed dinner at the Ocean Cliff Restaurant where they soaked up an incredible sunset together. The lobster wasn't bad either!
The ride home was 9 very long hours and this was tough on both Deb and Will. Since Deb's kidneys are not functioning at 100%, her legs and abdomen are swelling and she is experiencing discomfort as a result of these new symptoms along with the persistent pain of the hemroids. The nurse came today and indicated that these symptoms reflect the natural progression of the disease and there is little to be done about them. She did recommend some adjustments to the medications to help enable Deb to be more comfortable as things progress.
Overall, sitting with Deb today, I continue to be amazed that, in spite of everything, Deb's primary thoughts are of concern and care for others. She wants everything to be as easy as possible for her family, and - as always - she asks what is going on in other's lives before ever focusing on her own. Our dear friend is such a special person and it is a blessing each day to be with her.
Unfortunately, Deb's energy levels are diminshing and she is not able to return as many phone calls and text messages as before. She loves reading the posts on the blog, so this is a wonderful way to stay connected and continue to share your prayers.
Monday, June 21, 2010
Hello, everyone. This is a joint effort between Mom and me. We are sitting together in the coolness of Mom and Dad's living room, the air conditioner whirring in the background, enjoying one another's presence. Mom wants to apologize for the lull in communication over the last week-and-a-half, but Miles' visit consumed all of her time. She, Dad, and Miles had a wonderful visit together. Mom wrote a book about their adventures and Miles provided the artwork. She is sure he will win a Caldecot medal for his illustrations. Their adventures included a trip to Sesame Place, and while Miles loved riding on the teacups and Big Bird's Balloon Race, he only enjoyed watching the characters from a distance. Once he got up close enough to touch Cookie Monster and Big Bird he was a little afraid and wanted to stay close to Mica and Pop Pop. They explored Morris Arboretum and checked out the train display and tree house, but Miles' favorite activity was Smith Playground in Fairmount Park. The wooden slide with burlap sacks to ride on was the same one his dad enjoyed as a child. Many friends visited for dinner or hosted Mom, Dad, and Miles. He was personable with everyone, and it was easy to see why he kept Mom and Dad smiling and laughing all week long. Every day, Mom and Miles enjoyed naps together and shared bedtimes, Miles tucked in his "big boy bed" on the floor beneath Mom and Dad's bed.
On Friday afternoon, Grant, Deborah and Claire arrived; John and I drove out on Saturday morning and will leave later today. The weekend was full of special times as a family, from quiet talks to game night to brunch at Bourbon Blue for Father's Day.
Unfortunately, Mom continues to struggle with pain from the hemmorhoids, compounded by the fact that her legs, ankles, and abdomen are swelling due to her kidneys not functioning at 100%. The caring hospice nurses are on top of the situation and are trying different options to alleviate these symptoms if possible. Mom and Dad plan to leave tomorrow (Tuesday) for vacation in Newport, Rhode Island and will return on Friday. They are really looking forward to one-on-one time together. Please pray for safe travels for them and pray that Mom will be able to enjoy the experience and not be plagued by pain and discomfort.
Thank you, dear friends, for beginning another week with us.
On Friday afternoon, Grant, Deborah and Claire arrived; John and I drove out on Saturday morning and will leave later today. The weekend was full of special times as a family, from quiet talks to game night to brunch at Bourbon Blue for Father's Day.
Unfortunately, Mom continues to struggle with pain from the hemmorhoids, compounded by the fact that her legs, ankles, and abdomen are swelling due to her kidneys not functioning at 100%. The caring hospice nurses are on top of the situation and are trying different options to alleviate these symptoms if possible. Mom and Dad plan to leave tomorrow (Tuesday) for vacation in Newport, Rhode Island and will return on Friday. They are really looking forward to one-on-one time together. Please pray for safe travels for them and pray that Mom will be able to enjoy the experience and not be plagued by pain and discomfort.
Thank you, dear friends, for beginning another week with us.
Friday, June 11, 2010
It is Friday
Hello Everyone,
I hope you have had a good week. Will and I just came home from doing some grocery shopping because tomorrow Miles comes to stay with us for the week. We are meeting Deborah and Grant at her brother's wedding midstate, putting the car seat in our car and driving home with our grandson. We are so thankful to have the opportunity to spend the time with him.
A very good friend texts me each morning with a thought for the day. She talked about praying this was a "gentle" day. I loved that. Now I look at each day and hope for that gentleness of pain, of attitude, of faith, of perserverance, and of kindness from me and to me. The word just has a natural feeling for me.
Have I experienced that gentleness each day this week? The pain level is more managed thanks to hospice care and my nurse, Kathy. I have some very painful hemorrhoids that the prescribed meds aren't cracking yet. Without those I really think I'd see a difference of pain.
My attitude has been more peaceful, enjoying the porch, a book, a walk. My faith is thankful for the caring and strength the Lord shows to me.
I hope I've made a difference in someone's life this week by being kind to them. I hope I don't get into that mindset of taking but never reciprocating.
Of course I'm prejudice but I think Nadine and John make a beautiful and joyfilled couple. They are so full of love for me as they continue to research clinical trials and alternative treatment. They are coming to Philly next weekend for a visit. How blessed I am to see all my kids this week.
Thanks for your support. Did you notice that I left perserverance out of my gentle accountability list? There are days I feel like a burden to others and wonder how this is going to play out and in what time frame. Then there are days, I think, "Yea, I'm still here and they can all continue to enjoy me!"
Blessings for this weekend.
Much love,
Deb
I hope you have had a good week. Will and I just came home from doing some grocery shopping because tomorrow Miles comes to stay with us for the week. We are meeting Deborah and Grant at her brother's wedding midstate, putting the car seat in our car and driving home with our grandson. We are so thankful to have the opportunity to spend the time with him.
A very good friend texts me each morning with a thought for the day. She talked about praying this was a "gentle" day. I loved that. Now I look at each day and hope for that gentleness of pain, of attitude, of faith, of perserverance, and of kindness from me and to me. The word just has a natural feeling for me.
Have I experienced that gentleness each day this week? The pain level is more managed thanks to hospice care and my nurse, Kathy. I have some very painful hemorrhoids that the prescribed meds aren't cracking yet. Without those I really think I'd see a difference of pain.
My attitude has been more peaceful, enjoying the porch, a book, a walk. My faith is thankful for the caring and strength the Lord shows to me.
I hope I've made a difference in someone's life this week by being kind to them. I hope I don't get into that mindset of taking but never reciprocating.
Of course I'm prejudice but I think Nadine and John make a beautiful and joyfilled couple. They are so full of love for me as they continue to research clinical trials and alternative treatment. They are coming to Philly next weekend for a visit. How blessed I am to see all my kids this week.
Thanks for your support. Did you notice that I left perserverance out of my gentle accountability list? There are days I feel like a burden to others and wonder how this is going to play out and in what time frame. Then there are days, I think, "Yea, I'm still here and they can all continue to enjoy me!"
Blessings for this weekend.
Much love,
Deb
Wednesday, June 9, 2010
Mid-Week Reflections
Hello, faithful friends.
My mom has been doing a great job of updating the blog while I've been consumed with wedding details, enjoying my honeymoon, and getting settled in our new house, but I wanted to share an anecdote with you this morning.
John and I are involved in a thriving church in the South Hills of Pittsburgh that ministers to us week after week. This past Monday he and I decided to attend a prayer and fasting service there. I dutifully picked up the list of church-wide prayer requests at the door as we entered and followed along point by point through the duration of the service. What I realized later is how easy it is to compartmentalize with God, to think that we are only "supposed to" pray for certain things in certain ways for certain amounts of time. Scripture tells us to "pray without ceasing," and I admit that my heart has forgotten this truth at times throughout this journey of Mom's diagnosis and battle. Since Mom made the decision to stop treatment I have become somewhat hardened and resigned, and the fire of hope in my heart has dimmed just a bit. During the corporate prayer time, as I sat next to him and held his hand, my sweet husband said, suddenly, and in a loud, clear voice: "I pray that you would heal Deb McKinney, that you would remove every trace of cancer from her body and make her whole again." His prayer, simple and straight-forward, resounded in my heart long after the topic had moved on to the missionaries in Panama and Vacation Bible School. And I realized that his faith is the kind of faith that can move mountains because it is pure and fresh and trusting.
I learned a lot from John that night--a lot about God, a lot about myself, a lot about all of us who claim to be people of faith. Let us not grow weary and lose heart. Let us anticipate God-sized healing and profound encounters with Him. Let us continue to pray for the seemingly-impossible request: Mom's total and complete healing.
And, in the meantime, we are so grateful for your continued support from near and far and your prayers for Mom to have pain-free days and meaningful time with family and friends.
On a side note, my dad's persistent request for more wedding photos on the blog prompted me to add some. Guess they can serve as a reminder of moments of joy in the midst of sometimes paralyzing hardship.
My mom has been doing a great job of updating the blog while I've been consumed with wedding details, enjoying my honeymoon, and getting settled in our new house, but I wanted to share an anecdote with you this morning.
John and I are involved in a thriving church in the South Hills of Pittsburgh that ministers to us week after week. This past Monday he and I decided to attend a prayer and fasting service there. I dutifully picked up the list of church-wide prayer requests at the door as we entered and followed along point by point through the duration of the service. What I realized later is how easy it is to compartmentalize with God, to think that we are only "supposed to" pray for certain things in certain ways for certain amounts of time. Scripture tells us to "pray without ceasing," and I admit that my heart has forgotten this truth at times throughout this journey of Mom's diagnosis and battle. Since Mom made the decision to stop treatment I have become somewhat hardened and resigned, and the fire of hope in my heart has dimmed just a bit. During the corporate prayer time, as I sat next to him and held his hand, my sweet husband said, suddenly, and in a loud, clear voice: "I pray that you would heal Deb McKinney, that you would remove every trace of cancer from her body and make her whole again." His prayer, simple and straight-forward, resounded in my heart long after the topic had moved on to the missionaries in Panama and Vacation Bible School. And I realized that his faith is the kind of faith that can move mountains because it is pure and fresh and trusting.
I learned a lot from John that night--a lot about God, a lot about myself, a lot about all of us who claim to be people of faith. Let us not grow weary and lose heart. Let us anticipate God-sized healing and profound encounters with Him. Let us continue to pray for the seemingly-impossible request: Mom's total and complete healing.
And, in the meantime, we are so grateful for your continued support from near and far and your prayers for Mom to have pain-free days and meaningful time with family and friends.
On a side note, my dad's persistent request for more wedding photos on the blog prompted me to add some. Guess they can serve as a reminder of moments of joy in the midst of sometimes paralyzing hardship.
Friday, June 4, 2010
Friday update
Hello All,
Nadine and I decided that I will update everyone about the week on Fridays and then she will write when she wants to share reflections.
This has been a week of total submersion into the hospice system. I've seen several intake nurses and just yesterday met with Kathy, who will be my personal nurse to continue this journey along side me. She is someone both Will and I feel can be trusted and relied upon. The folks at Hospice have been able to get the pain level more manageable for me as we try different combinations and dosages.
I was taking a walk with a friend for breakfast at the coffee house and tripped on the sidewalk and fell. Some knee and hand bruises and aches from trying to twist my body so I wouldn't go down headfirst. Wow, I thought, "Now I can't walk right, what's next?" Figured that out quickly when I could not recall the word for mulch. Thought--there goes my brain too. Fortunately I was able to recall the flowers I wanted planted around the house so there is hope for me yet!
Several visits from some long time friends. I enjoy seeing them so. Will is having a more difficult time. He feels that folks are lining up to say goodbye and he stuggles with that. I am thankful that I am fortunate to have friends who care about me and want to be with me during the months ahead.
Please continue to pray for all those in my family as we look to the future and the Hope we have in Christ and the promise of eternal life with Him. I do have a "home in gloryland that outshines the sun."
Much love,
Deb
Nadine and I decided that I will update everyone about the week on Fridays and then she will write when she wants to share reflections.
This has been a week of total submersion into the hospice system. I've seen several intake nurses and just yesterday met with Kathy, who will be my personal nurse to continue this journey along side me. She is someone both Will and I feel can be trusted and relied upon. The folks at Hospice have been able to get the pain level more manageable for me as we try different combinations and dosages.
I was taking a walk with a friend for breakfast at the coffee house and tripped on the sidewalk and fell. Some knee and hand bruises and aches from trying to twist my body so I wouldn't go down headfirst. Wow, I thought, "Now I can't walk right, what's next?" Figured that out quickly when I could not recall the word for mulch. Thought--there goes my brain too. Fortunately I was able to recall the flowers I wanted planted around the house so there is hope for me yet!
Several visits from some long time friends. I enjoy seeing them so. Will is having a more difficult time. He feels that folks are lining up to say goodbye and he stuggles with that. I am thankful that I am fortunate to have friends who care about me and want to be with me during the months ahead.
Please continue to pray for all those in my family as we look to the future and the Hope we have in Christ and the promise of eternal life with Him. I do have a "home in gloryland that outshines the sun."
Much love,
Deb
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