Scott
Saturday was mom's memorial service.
We started this blog on May 9, 2015. It took less than a year for her struggle to be over. In 10 months, we have grown incredibly closer as a family. Dad retired and stepped up to help mom like never before. We saw him dedicate himself to mom. Amy and I spent more time in Butler than we had since we were kids.
Mom's service was a culmination of all of that. It was remarkable.
We truly celebrated mom's life in a way that most befitted her. She would have been happy with the service and luncheon. She would have enjoyed the food and the company. Surprisingly we didn't cry a lot. There were tears for sure, but Amy, Dad and I were able to make it through our parts in the service and in greeting guests without a major breakdown.
And now we start a new chapter in our family's life... a time where mom's presence is a memory, where her spirit lives on in our lives, where we feel her presence and her love without her physically with us.
She touched the lives of so many people in so many ways and we will all miss her.
Reflecting on today, and on this process...
Always take the time to show someone you love them, don't wait for a better time.
Send notes, cards and photos. We didn't print out one email, but we looked at cards, letters and tangible things we had from mom's life.
Take photos, print out photos, don't be shy about capturing the moment.
And love each other.
In preparing for mom's service I looked for verse from the Bible that summed up what mom taught us, that encompassed all that she was to us. And I found Romans 15:1-7
"We who are strong ought to bear with the failings of the weak and not to please ourselves. 2 Each of us should please our neighbors for their good, to build them up. 3 For even Christ did not please himself but, as it is written: “The insults of those who insult you have fallen on me.”[a] 4 For everything that was written in the past was written to teach us, so that through the endurance taught in the Scriptures and the encouragement they provide we might have hope.
5 May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had, 6 so that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ.
7 Accept one another, then, just as Christ accepted you, in order to bring praise to God."
Mom always taught us to accept one another, to bear with the failings of the weak, to build up our neighbors and to love each other.
She lived that out in her life and she now lives it out through ours.
We love you Mary, we will miss you very much.
Monday, March 21, 2016
Saturday, March 12, 2016
Saying Goodbye
Scott
It is with great sadness that we have to report that mom passed away on Friday afternoon.
It was really wonderful to have such a nice birthday with her.
We are in great sorrow as we grieve her loss. But the support of our friends and family has been amazing and we grow closer to each other through this event. We feel mom's love with us as we are moving through this time.
Mom did not want a viewing or a funeral so we are carrying out her wishes by holding a memorial service for her at our home church at Thorncreek next Saturday morning. We will have a private burial time for our family and close friends on Monday morning where we will say our final goodbye. I am sure there will be a lot of tears and memories and laughter and joyful moments.
Today I set up a memorial donation page in honor of mom on the Humane Society of the United States' website. In lieu of flowers you can support my mom's memory by supporting one of her favorite causes, protecting and loving animals.
http://action.humanesociety.org/site/TR?px=7604914&pg=personal&fr_id=1175
We will also be converting her Facebook page to a memorial page soon.
Tonight we submitted her official obituary and photo. I'm including that here in memory and honor of her.
It is with great sadness that we have to report that mom passed away on Friday afternoon.
It was really wonderful to have such a nice birthday with her.
We are in great sorrow as we grieve her loss. But the support of our friends and family has been amazing and we grow closer to each other through this event. We feel mom's love with us as we are moving through this time.
Mom did not want a viewing or a funeral so we are carrying out her wishes by holding a memorial service for her at our home church at Thorncreek next Saturday morning. We will have a private burial time for our family and close friends on Monday morning where we will say our final goodbye. I am sure there will be a lot of tears and memories and laughter and joyful moments.
Today I set up a memorial donation page in honor of mom on the Humane Society of the United States' website. In lieu of flowers you can support my mom's memory by supporting one of her favorite causes, protecting and loving animals.
http://action.humanesociety.org/site/TR?px=7604914&pg=personal&fr_id=1175
We will also be converting her Facebook page to a memorial page soon.
Tonight we submitted her official obituary and photo. I'm including that here in memory and honor of her.
MARY ALICE (LEES)
MYERS
March 10, 1949 – March 11, 2016
March 10, 1949 – March 11, 2016
Mary Alice (Lees) Myers passed away peacefully the afternoon
of Friday, March 11, 2016, surrounded by family at her home in Jefferson
Township, Butler, PA. Born in Pittsburgh, PA, on March 10, 1949, to Harry and Hilda
(Holton) Lees, Mary spent her childhood in Penn Township, Butler,
PA. A 1967 graduate of Knoch High School, she held many 4H honors in dress
making and clothing. She married Francis Samuel Myers on December 31, 1970.
She is survived by her husband Francis and her children,
Scott A. Myers of Ferndale, MI, and Amy N. Myers of Philadelphia, PA. She is also survived by her parents, Harry and
Hilda Lees of Penn Township, Butler, PA, and her siblings, Tom Lees of Butler,
PA, and Patricia (Lees) Hartman of Lyndora, PA.
Mary worked for the Commonwealth of Pennsylvania at the Butler
County Assistance Office and was a member of AFSCME for over 25 years, retiring
in the Spring of 2011. A longtime member of Thorncreek United Methodist Church,
she taught Sunday School and served for several years as the church secretary,
and she and her husband also served as youth pastors. She had a passion for
animals, supporting such organizations as the ASPCA and the Humane Society.
The Myers and Lees families and members of Thorncreek United
Methodist Church will carry out Mary’s wishes by welcoming family, friends,
neighbors, and colleagues to a brief memorial service at 11:00 AM on Saturday,
March 19, at Thorncreek United Methodist Church, 142 Rockdale Road, Butler, PA
16002. The service will be immediately followed by a luncheon reception in the
church’s fellowship hall.
In lieu of flowers, Mary has asked that family and friends
support the Humane Society of the United States by visiting a special memorial
page designated for Mary at:
http://action.humanesociety.org/site/TR?px=7604914&pg=personal&fr_id=1175
Regarding Mary’s passing the family has issued the
following: “Our family has been touched by the outpouring of support from those
who loved Mary and have been touched by her spirit. We will miss her dearly and
will gather up these memories and cherish them as we honor her through our
lives.”
Thursday, March 10, 2016
Happy Birthday
Scott
Today (well, technically yesterday) was mom's 67th birthday.
She spent it at home resting for much of the day, reading cards from friends and family, and spending time with us. All things considered it was a nice birthday evening.
Since our last update some things have changed.
Mom came home from the hospital on Friday, March 4. After spending 17 days at Butler Memorial, Mom, Dad, and her doctors determined that it was time for her to go home. She had entered the hospital this time with very abnormal electrolyte levels and, as it turns out a blood infection (Sepsis), urinary infection and a little bit of pneumonia. A regimented plan of antibiotics took care of her infections (The blood infection most likely caused by her last visit to the hospital.) So that was a very good thing.
What was not so good was mom's recovery from everything else.
Let's talk for a moment about hospitals.
When you go into the hospital, or are admitted, your condition is considered "Acute." This means that you have an active situation that the hospital will do their very best to resolve, get you better and send you home. This is what hospitals do.
In mom's case, those conditions were her infections and her electrolyte levels. The hospital successfully resolved her infections while also treating her electrolytes. But her levels, as we knew going in, have been thrown out of whack by the pervasiveness, and proliferation of cancer through her body. The staff would get her levels to normalize, but once they stopped administering treatment, they'd go back to abnormal... all the while she continued to get weaker.
Cancer really disrupts your body's ability to regulate itself.
So after 17 days of hospital care, working round the clock to fix mom's problems it became clear to us that this beastly disease, this stage of cancer would not yield its grip on her through the means, procedures and medicinal technologies available to us. In short, the hospital ran out of ways and their ability to "fix" mom's problems... And mom and dad chose to begin hospice care at home.
Going Home
Last Friday was a very difficult day. I was still in Detroit, planning to spend the weekend with Ian before coming to PA for mom's birthday. But once the decision was made to bring mom home, my plans changed and I drove home Saturday afternoon. Amy had already been here since Feb 20th... she went ahead of Dad and the ambulance and met the first hospice team to set up a hospital bed at the house and prep for mom's arrival.
Once home, our hospice agency began 24/7 care, keeping an aide at the house for 24 hours a day... one for the day time and one for night.
There is a lot of misunderstandings of what hospice means. We have learned so much in the past week. These people have been amazing to say the least. On Saturday last week, the aid that was here during the day gave mom the most extensive, therapeutic and beneficial hand bath/scrub ever. When I got to the house, mom looked radiant. Her skin that had grown gray and pale in the hospital was flush and soft. Though she was weak and had lost her voice due to the dry hospital air, she was restful and peaceful. We had not even really started pain medications. Coming home put mom at rest both in body and in mind, and the hospice nurses and aids have continued to show her that ever since. As mom is able she takes her medicines, supplements etc. Hospice, it turns out, doesn't shut everything off... it just focuses on making mom as comfortable as possible.
Mary 67
The last 36 hours have been rough for us.
Mom's pain has continued to increase, little by little. We have to often adjust her in the bed. She is too weak to pull herself up, move her legs, wiggle her butt, etc. Things we all take for granted. She is having more and more pain directly related to the cancer. She has good pain meds that help, and she is sleeping a lot.
We've all taken turns sitting with her, holding her hand, brushing her hair, talking to her, listening to her laugh at things... and sometimes listening to her grumble and, well, she has that right. And being who she is, she always apologizes.
We had 24 hour care for the first couple of days, then we were on our own for two nights... with nurse and aid visits during the day. Yesterday, we went back to having a night nurse who stays up with mom through the night to monitor her and help her when she needs it - giving us a chance to sleep. Tonight's nurse was the same as last night and she brought mom a chocolate birthday cake after she said that was her favorite. She is awesome. She just sits and pours care on mom almost like an Angel.
Today it rained here all day, like it's raining in our hearts.
We're crying a lot, we're sharing a lot, and we're loving a lot. In some ways it feels as though heaven is pouring out on us and sometimes that's a blessing and sometimes it's painful. And as we move into Spring and the days grow longer we know that our days with mom are getting shorter. We do not know how many days we have left, we only know that we are thankful for each one that comes and goes.
We are passing along all messages, cards, etc mom receives, so feel free to reach out, comment on Facebook, etc. Words of hope, kindness and love are great. Neighbors, church members and some family members have brought food which is such an amazing blessing. (My aunt Lois and uncle Carl are absolute champions.) And we can always feel those prayers, thoughts and positive vibes, they are always welcome.
Today (well, technically yesterday) was mom's 67th birthday.
She spent it at home resting for much of the day, reading cards from friends and family, and spending time with us. All things considered it was a nice birthday evening.
Since our last update some things have changed.
Mom came home from the hospital on Friday, March 4. After spending 17 days at Butler Memorial, Mom, Dad, and her doctors determined that it was time for her to go home. She had entered the hospital this time with very abnormal electrolyte levels and, as it turns out a blood infection (Sepsis), urinary infection and a little bit of pneumonia. A regimented plan of antibiotics took care of her infections (The blood infection most likely caused by her last visit to the hospital.) So that was a very good thing.
What was not so good was mom's recovery from everything else.
Let's talk for a moment about hospitals.
When you go into the hospital, or are admitted, your condition is considered "Acute." This means that you have an active situation that the hospital will do their very best to resolve, get you better and send you home. This is what hospitals do.
In mom's case, those conditions were her infections and her electrolyte levels. The hospital successfully resolved her infections while also treating her electrolytes. But her levels, as we knew going in, have been thrown out of whack by the pervasiveness, and proliferation of cancer through her body. The staff would get her levels to normalize, but once they stopped administering treatment, they'd go back to abnormal... all the while she continued to get weaker.
Cancer really disrupts your body's ability to regulate itself.
So after 17 days of hospital care, working round the clock to fix mom's problems it became clear to us that this beastly disease, this stage of cancer would not yield its grip on her through the means, procedures and medicinal technologies available to us. In short, the hospital ran out of ways and their ability to "fix" mom's problems... And mom and dad chose to begin hospice care at home.
Going Home
Last Friday was a very difficult day. I was still in Detroit, planning to spend the weekend with Ian before coming to PA for mom's birthday. But once the decision was made to bring mom home, my plans changed and I drove home Saturday afternoon. Amy had already been here since Feb 20th... she went ahead of Dad and the ambulance and met the first hospice team to set up a hospital bed at the house and prep for mom's arrival.
Once home, our hospice agency began 24/7 care, keeping an aide at the house for 24 hours a day... one for the day time and one for night.
There is a lot of misunderstandings of what hospice means. We have learned so much in the past week. These people have been amazing to say the least. On Saturday last week, the aid that was here during the day gave mom the most extensive, therapeutic and beneficial hand bath/scrub ever. When I got to the house, mom looked radiant. Her skin that had grown gray and pale in the hospital was flush and soft. Though she was weak and had lost her voice due to the dry hospital air, she was restful and peaceful. We had not even really started pain medications. Coming home put mom at rest both in body and in mind, and the hospice nurses and aids have continued to show her that ever since. As mom is able she takes her medicines, supplements etc. Hospice, it turns out, doesn't shut everything off... it just focuses on making mom as comfortable as possible.
Mary 67
The last 36 hours have been rough for us.
Mom's pain has continued to increase, little by little. We have to often adjust her in the bed. She is too weak to pull herself up, move her legs, wiggle her butt, etc. Things we all take for granted. She is having more and more pain directly related to the cancer. She has good pain meds that help, and she is sleeping a lot.
We've all taken turns sitting with her, holding her hand, brushing her hair, talking to her, listening to her laugh at things... and sometimes listening to her grumble and, well, she has that right. And being who she is, she always apologizes.
We had 24 hour care for the first couple of days, then we were on our own for two nights... with nurse and aid visits during the day. Yesterday, we went back to having a night nurse who stays up with mom through the night to monitor her and help her when she needs it - giving us a chance to sleep. Tonight's nurse was the same as last night and she brought mom a chocolate birthday cake after she said that was her favorite. She is awesome. She just sits and pours care on mom almost like an Angel.
Today it rained here all day, like it's raining in our hearts.
We're crying a lot, we're sharing a lot, and we're loving a lot. In some ways it feels as though heaven is pouring out on us and sometimes that's a blessing and sometimes it's painful. And as we move into Spring and the days grow longer we know that our days with mom are getting shorter. We do not know how many days we have left, we only know that we are thankful for each one that comes and goes.
We are passing along all messages, cards, etc mom receives, so feel free to reach out, comment on Facebook, etc. Words of hope, kindness and love are great. Neighbors, church members and some family members have brought food which is such an amazing blessing. (My aunt Lois and uncle Carl are absolute champions.) And we can always feel those prayers, thoughts and positive vibes, they are always welcome.
Sunday, February 28, 2016
One Days
Scott
When we started this chapter in Mom's Breast Cancer journey everyone told me that you have to take things one day at a time. I had heard this before many times... but now that we're in the middle of all of this, we now know the absolute truth of that statement.
Every day in mom's walk with this disease is a new and different day. And it's extremely difficult to not get caught up in the planning for what could happen, to ask questions about how long does she have, what will tomorrow bring? etc. etc. The more we get caught up in that, the more anxiety and stress overwhelms us.
It's been a while since mom has had any significant pain, which for someone in this stage of cancer is pretty remarkable. It's certainly something that we are very thankful for. Being pretty much bed-ridden, has left mom being occasionally uncomfortable, that's really all the pain that she's experienced. Prior to her surgery in December, she was in quite a lot of pain from a bowel obstruction caused by diffused gastric cancer (Breast Cancer in the abdomen). Her only pain through this process has really only been when she's experienced an obstruction.
So when she started having some pain yesterday, it's really hard to not immediately to start to worry that it's another obstruction... and at this point another obstruction would be a very bad thing. The truth is that there are several things that could be causing her pain.
And that's the day by day.
We wait for a moment to see what is going on and then take the next step.
The next step has often been OK.
It's natural to worry that the next step may not, but equally important to remember that it may be OK, it's often OK and even if it's not, we can get through it together.
When we started this chapter in Mom's Breast Cancer journey everyone told me that you have to take things one day at a time. I had heard this before many times... but now that we're in the middle of all of this, we now know the absolute truth of that statement.
Every day in mom's walk with this disease is a new and different day. And it's extremely difficult to not get caught up in the planning for what could happen, to ask questions about how long does she have, what will tomorrow bring? etc. etc. The more we get caught up in that, the more anxiety and stress overwhelms us.
It's been a while since mom has had any significant pain, which for someone in this stage of cancer is pretty remarkable. It's certainly something that we are very thankful for. Being pretty much bed-ridden, has left mom being occasionally uncomfortable, that's really all the pain that she's experienced. Prior to her surgery in December, she was in quite a lot of pain from a bowel obstruction caused by diffused gastric cancer (Breast Cancer in the abdomen). Her only pain through this process has really only been when she's experienced an obstruction.
So when she started having some pain yesterday, it's really hard to not immediately to start to worry that it's another obstruction... and at this point another obstruction would be a very bad thing. The truth is that there are several things that could be causing her pain.
And that's the day by day.
We wait for a moment to see what is going on and then take the next step.
The next step has often been OK.
It's natural to worry that the next step may not, but equally important to remember that it may be OK, it's often OK and even if it's not, we can get through it together.
Saturday, February 27, 2016
Working together with each other
Scott
I started this post when I was in PA visiting mom last weekend in the hospital, but never finished the post.
As we wait for dad & Amy (from the train) to arrive at Butler hospital, mom is resting as comfortably as she can and I get to reflect on this day and this trip. I go home tomorrow morning.
As we wait for dad & Amy (from the train) to arrive at Butler hospital, mom is resting as comfortably as she can and I get to reflect on this day and this trip. I go home tomorrow morning.
This morning we had a bit of a scare thanks to an ambitious urologist. For the past year or so mom's had a slightly swollen Kidney. It's something her urologist has kept an eye on but this episode in the hospital brought it to the forefront. In mom's state the nurses are charting and tracking everything that comes out of her. Blood infections, or Sepsis, are no joke.
So we started to do what you have to do in these situations and be the voice that connects all of the doctors dealing with your care together. We called the oncologists office, talked to the nurses and then they brought in the urologist. Moms oncologist office really stepped up and spearheaded contacting everyone and sharing mom's details so together we all were able to determine a course of action. In this case, that is no action.
When we all worked together we were not only able to see mom's situation better, but she felt strong enough to have her opinion heard and supported. But it took a lot of work.
I wish our system (or this system here) wasn't so disconnected. Anyone's care should be a joint effort. Medical records shouldn't have to be discovered by a new specialist. A new nurse in hospital should never have to ask YOU why you're there.
Thursday, February 18, 2016
The flipside
Scott
I started writing this post on Monday of this week (2/15) and kept stopping because I had something else to do or a place to go, mostly because I was trying really hard to get a series of things taken care of to take an extended weekend to spend time with mom & dad.
It's late on Thursday night and I'm in PA and have the time to make a proper post.
This post is going to be a little different than past blogs. I'm going to take a moment to talk about mom's cancer journey for me.
But FIRST... and update.
Tuesday mom had blood drawn (standard) and the tests revealed that her electrolytes were a mess and she had a couple of infections, so her doctors wanted her to go to the hospital. Luckily for dad, my uncle was there and able to help him get mom out of the house and to the ER. Tonight I'm blogging from her bedside in the hospital.
All things considered, she's doing well.
Unlike last week, she is a little stronger and has been able to stand and scootch (scooch?) from the bed to a chair. This is a really good thing. Her nurse informed us late tonight that her levels have been improving, so it's becoming more reasonable to believe that they might release her tomorrow. We'll just have to wait and see.
Now for me...
Of course it's hard to have a loved one go through cancer. That's pretty much a given.
Cancer comes along and F's up your life no matter who you are and what your relationship is to it...
For our family, this experience has flipped our lives upside down.
Growing up, we were pretty poor. And so we learned from experience that family came second to work. It's something my parents instilled in Amy and I as we left home. No matter what, don't jeopardize your source of income. Visit when you have time off from work, go back after your visit when you need to, even if that means the visit is super short. Family always came second to work, career and other obligations.
So now... it's flipped. Mom now has to be our priority.
I started writing this post on Monday of this week (2/15) and kept stopping because I had something else to do or a place to go, mostly because I was trying really hard to get a series of things taken care of to take an extended weekend to spend time with mom & dad.
It's late on Thursday night and I'm in PA and have the time to make a proper post.
This post is going to be a little different than past blogs. I'm going to take a moment to talk about mom's cancer journey for me.
But FIRST... and update.
Tuesday mom had blood drawn (standard) and the tests revealed that her electrolytes were a mess and she had a couple of infections, so her doctors wanted her to go to the hospital. Luckily for dad, my uncle was there and able to help him get mom out of the house and to the ER. Tonight I'm blogging from her bedside in the hospital.
All things considered, she's doing well.
Unlike last week, she is a little stronger and has been able to stand and scootch (scooch?) from the bed to a chair. This is a really good thing. Her nurse informed us late tonight that her levels have been improving, so it's becoming more reasonable to believe that they might release her tomorrow. We'll just have to wait and see.
Now for me...
Of course it's hard to have a loved one go through cancer. That's pretty much a given.
Cancer comes along and F's up your life no matter who you are and what your relationship is to it...
For our family, this experience has flipped our lives upside down.
Growing up, we were pretty poor. And so we learned from experience that family came second to work. It's something my parents instilled in Amy and I as we left home. No matter what, don't jeopardize your source of income. Visit when you have time off from work, go back after your visit when you need to, even if that means the visit is super short. Family always came second to work, career and other obligations.
So now... it's flipped. Mom now has to be our priority.
That makes the situation even harder for my sister and I. We both have this intense work ethic drilled into us. We've always been work-horses, putting a lot of pride in our work, our accomplishments and our various projects.
For me, and I know there are many reasons for this, I am always pouring myself into things and projects (this for example). As such, I've poured myself into creative endeavors like improv, teaching, and directing; starting my own freelance PR company; pushing the limits of my full time job into projects that consume my time far beyond the time I have to give; and of course into my relationship with Ian, a gift I treasure and one that has taught me value in enjoying my downtime.
For most of my life, my folks have celebrated those things with me. I have always felt their pride in my accomplishments. I still feel it, even as mom struggles with her health. And that makes it all the more difficult to push the hold button on things, to pull my hand back from the miriad of balls I'm juggling so that I can enjoy these times with mom and help Dad, and Amy when they need it.
But these are the times fables are made of. These are the moments pastors preach about. These are the stories our elders tell of misplaced priorities - holding onto things that pass away instead of people and memories we carry with us forever.
And so we come home.
We find a way to make things work, to delegate obligations, to rely on others who offer to help, and to focus on what's important, on time together. We share love, give love and receive love and pray for as many days as the Good Lord will allow us to celebrate our lives together.
I hope that through this journey I'll retain some of that... that I'll be more engaged with those I love, that I'll take time for family and friends in need, and that I'll love a little more.
Saturday, February 6, 2016
Several steps forward and a giant slide back
(Scott)
After my last post, mom continued to get better. She followed the doctors orders and it seemed like things were doing well. She was at home with dad, walking and getting stronger. They even went to church and went out to eat after doctors appointments. Occasionally they'd have some struggles with the ostomy bag, but it seems like that's becoming rather routine for them. Things were generally looking up.
And then they weren't.
Dad called us January 26th to let us know that he had to take mom to the emergency room. The visiting nurse had come by that day and taken mom's blood. She had been feeling tired so I don't think it was a big surprise that when they ran it at the hospital it showed that she was severely dehydrated. It was a struggle for dad to get her down the steps, into the car and to the hospital. She was mentally blurry and very very week.
She was ULTRA dehydrated.
In just a few days she went from being on the road to a good recovery to being unable to sit up in a hospital bed by herself. In the hospital they began the same kind of regiment that had worked before. Lots of IV fluids, lots of water and food. Lots of rest. And things were getting better.
Ian and I had planned to come visit Mom & Dad that weekend to repaint the living room, dining room and hallway. Something mom had asked us to do and we were excited to make happen. Being stuck in the house recovering from cancer sucks, so anything to brighten that space would be great. But... with mom still in the hospital we all decided it would be best to postpone the painting.
On Tuesday mom was well enough and mentally back enough to start rehab. They were scheduled to move her to the transitional unit at the hospital, so Dad's call later that day with bad news was another surprise.
Dehydration led to immobility. Being immobile led to blood clots in mom's leg. Blood Clots in the legs are bad enough but in this circumstance they are emergency bad. The doctors installed a filter to prevent the clots from causing more harm by breaking free. Within 24 hours it was clear that blood thinners and clot solvents (?) weren't enough and the doctors wanted to do an angiograph... a sort of roto-rooter of the arteries and veins in mom's lower leg.
After much persuading, mom agreed to have the procedure done and with a stent, it successfully restored blood flow to her foot.
That's the easy part of this update.
Here's the big slide back...
After mom's deep resistance to the simple Angiograph, she had a conversation with her oncologist.
Remember in my last post that mom had two weeks to get better?
Two weeks have well come and gone and mom is still very weak. Upon my parents' insistence, they released her from the hospital so that she can be more comfortable at home.
I drove to PA this weekend to be with mom and dad. Amy will be in by train tonight. I have to head back to Michigan tomorrow. This was just a short trip for me.
Nurses are now coming to the house every morning to administer home IV's so that mom can keep hydrated. The list of medicines for her to keep nutrients in her system has grown.
Mom is still not drinking enough water... the phrase You can lead a horse to water... applies here.
This is a struggle, a real struggle.
She is very weak. She cannot stand, she is able to walk with a walker - but not well.
It seems like cancer is slowly taking her away, bit by bit and I feel helpless, we feel helpless. When the cancer is basically un-treatable you just have to treat the effects. At this point we're full-on into Palliative care for mom. The goal is to treat the effects that cancer has on her and help her get strong.
We're hoping and praying that she can get strong enough to make a last chance attempt to treat the actual cancer through Chemotherapy or something else. But the longer she goes without getting to that point, the farther that hope seems.
Some family and friends have helped mom and dad with things like bringing meals over, stopping by to say hello, and visiting when mom's feeling well. All these things are answers to prayers and helpful for them. With Amy & I living so far away, we can't express how much we appreciate this from our family and friends.
And prayers, thoughts, cards and flowers are always helpful.
And with all of that we'll see how she gets through this period.
Tonight I'm reminded that while cancer is indiscriminate in who it attacks, when and how. Faith leads me to believe that things like this have a greater purpose, a lesson, an experience, a need to learn, to care, to be. We are fortunate when we can see that purpose in the moment and must be patient when we cannot.
After my last post, mom continued to get better. She followed the doctors orders and it seemed like things were doing well. She was at home with dad, walking and getting stronger. They even went to church and went out to eat after doctors appointments. Occasionally they'd have some struggles with the ostomy bag, but it seems like that's becoming rather routine for them. Things were generally looking up.
And then they weren't.
Dad called us January 26th to let us know that he had to take mom to the emergency room. The visiting nurse had come by that day and taken mom's blood. She had been feeling tired so I don't think it was a big surprise that when they ran it at the hospital it showed that she was severely dehydrated. It was a struggle for dad to get her down the steps, into the car and to the hospital. She was mentally blurry and very very week.
She was ULTRA dehydrated.
In just a few days she went from being on the road to a good recovery to being unable to sit up in a hospital bed by herself. In the hospital they began the same kind of regiment that had worked before. Lots of IV fluids, lots of water and food. Lots of rest. And things were getting better.
Ian and I had planned to come visit Mom & Dad that weekend to repaint the living room, dining room and hallway. Something mom had asked us to do and we were excited to make happen. Being stuck in the house recovering from cancer sucks, so anything to brighten that space would be great. But... with mom still in the hospital we all decided it would be best to postpone the painting.
On Tuesday mom was well enough and mentally back enough to start rehab. They were scheduled to move her to the transitional unit at the hospital, so Dad's call later that day with bad news was another surprise.
Dehydration led to immobility. Being immobile led to blood clots in mom's leg. Blood Clots in the legs are bad enough but in this circumstance they are emergency bad. The doctors installed a filter to prevent the clots from causing more harm by breaking free. Within 24 hours it was clear that blood thinners and clot solvents (?) weren't enough and the doctors wanted to do an angiograph... a sort of roto-rooter of the arteries and veins in mom's lower leg.
After much persuading, mom agreed to have the procedure done and with a stent, it successfully restored blood flow to her foot.
That's the easy part of this update.
Here's the big slide back...
After mom's deep resistance to the simple Angiograph, she had a conversation with her oncologist.
Remember in my last post that mom had two weeks to get better?
Two weeks have well come and gone and mom is still very weak. Upon my parents' insistence, they released her from the hospital so that she can be more comfortable at home.
I drove to PA this weekend to be with mom and dad. Amy will be in by train tonight. I have to head back to Michigan tomorrow. This was just a short trip for me.
Nurses are now coming to the house every morning to administer home IV's so that mom can keep hydrated. The list of medicines for her to keep nutrients in her system has grown.
Mom is still not drinking enough water... the phrase You can lead a horse to water... applies here.
This is a struggle, a real struggle.
She is very weak. She cannot stand, she is able to walk with a walker - but not well.
It seems like cancer is slowly taking her away, bit by bit and I feel helpless, we feel helpless. When the cancer is basically un-treatable you just have to treat the effects. At this point we're full-on into Palliative care for mom. The goal is to treat the effects that cancer has on her and help her get strong.
We're hoping and praying that she can get strong enough to make a last chance attempt to treat the actual cancer through Chemotherapy or something else. But the longer she goes without getting to that point, the farther that hope seems.
Some family and friends have helped mom and dad with things like bringing meals over, stopping by to say hello, and visiting when mom's feeling well. All these things are answers to prayers and helpful for them. With Amy & I living so far away, we can't express how much we appreciate this from our family and friends.
And prayers, thoughts, cards and flowers are always helpful.
And with all of that we'll see how she gets through this period.
Tonight I'm reminded that while cancer is indiscriminate in who it attacks, when and how. Faith leads me to believe that things like this have a greater purpose, a lesson, an experience, a need to learn, to care, to be. We are fortunate when we can see that purpose in the moment and must be patient when we cannot.
Saturday, January 9, 2016
This climb is long
(Scott)
A lot has happened since our last post.
Mom was released from the hospital the Monday after Christmas. She had been getting stronger, so it was what we expected. Amy said goodbye to Brad as he left for Philly that afternoon, then helped dad get mom settled at home.
Unlike the last time mom came home from her surgery, this time she had little problems eating, very little pain and almost no nausea. But she was pretty weak and the ileostomy bag proved to be more difficult and complicated than we had expected.
SIDE NOTE ON THIS: I still remain baffled at how ostomy technology remains virtually the same today as it was in the 1950's. We have artificial limbs that the wearers can control with their mind, mimicking a flesh and blood arm/hand/leg, and we can do freaking FACE transplants, but someone who can't pass stool unassisted needs to essentially duct tape a plastic bag to their side and hope the tape holds? WTF?!? We even have artificial buttholes (seriously) for God's sake.
After a few days, and a couple of visits from the VNA & an ostomy specialist, Amy left for Philly after mom's latest appointment with her oncologist. Thanks to Amy's workphone, I was able to FaceTime in with them at mom's appointment so we could all hear from Dr. Pathe about mom's current situation and her plan for next steps. It was really great to be able to be there in some way. (read between the lines that I wish mom or dad had a smart phone...)
After the oncologist appointment, we realized that aside from having cancer, mom's biggest hurdle right now is mental, and in more ways than just dealing with having cancer and an ostomy bag.
Back when this latest battle started in April / May, mom had essentially shut down. We think that in learning that she had cancer again, she dealt with it by essentially mentally closing everything off. She lost almost all of her short term memory and CAT scans and MRI's showed no reason for it.
Then she got better, increasingly better and this fall was nearly back to pre-shut down.
Today, it's a struggle to get mom to do the things she needs to do to get better. She needs to drink water, constantly throughout the day, small sips every few minutes to stay hydrated. With a shorter bowel and no large intestine, maintaining a regular and healthy diet is more important that it has ever been. The time for mom to be a picky eater is not now. Initially we called it stubbornness, but as time moves on we're worried that she's just not comprehending the seriousness of it. Drink water, eat well or end up back in the hospital.
And she did just that last night.
After a minor "blow out" with the ostomy bag, Dad started working with mom to fix it and she became confused and started slurring words and was dizzy. A state that she's gone in and out of during her recovery - a state the doctors and nurses assure us is an indication of dehydration. A test the visiting nurses and Mom's doctor told Dad to do to determine if a hospital trip was needed showed that she needed to go.
Mom is going to be in the hospital for a couple of days to get stronger and re-hydrated. She doesn't want to be there, it makes her cranky. Dad had to give the nurses a refresher on how to deal with mom's ileostomy bag. I'm really proud of him that he has gotten good enough to help explain the process to someone else.
In two weeks she has another appointment with her oncologist. She has two weeks to get strong enough to take the next step in her cancer journey.
We are all pulling for mom to keep making the climb out of this valley, to dig in and do what she has to do to get stronger. The climb is long and difficult. Many have made it before. We are all praying that so can she.
A lot has happened since our last post.
Mom was released from the hospital the Monday after Christmas. She had been getting stronger, so it was what we expected. Amy said goodbye to Brad as he left for Philly that afternoon, then helped dad get mom settled at home.
Unlike the last time mom came home from her surgery, this time she had little problems eating, very little pain and almost no nausea. But she was pretty weak and the ileostomy bag proved to be more difficult and complicated than we had expected.
SIDE NOTE ON THIS: I still remain baffled at how ostomy technology remains virtually the same today as it was in the 1950's. We have artificial limbs that the wearers can control with their mind, mimicking a flesh and blood arm/hand/leg, and we can do freaking FACE transplants, but someone who can't pass stool unassisted needs to essentially duct tape a plastic bag to their side and hope the tape holds? WTF?!? We even have artificial buttholes (seriously) for God's sake.
After a few days, and a couple of visits from the VNA & an ostomy specialist, Amy left for Philly after mom's latest appointment with her oncologist. Thanks to Amy's workphone, I was able to FaceTime in with them at mom's appointment so we could all hear from Dr. Pathe about mom's current situation and her plan for next steps. It was really great to be able to be there in some way. (read between the lines that I wish mom or dad had a smart phone...)
After the oncologist appointment, we realized that aside from having cancer, mom's biggest hurdle right now is mental, and in more ways than just dealing with having cancer and an ostomy bag.
Back when this latest battle started in April / May, mom had essentially shut down. We think that in learning that she had cancer again, she dealt with it by essentially mentally closing everything off. She lost almost all of her short term memory and CAT scans and MRI's showed no reason for it.
Then she got better, increasingly better and this fall was nearly back to pre-shut down.
Today, it's a struggle to get mom to do the things she needs to do to get better. She needs to drink water, constantly throughout the day, small sips every few minutes to stay hydrated. With a shorter bowel and no large intestine, maintaining a regular and healthy diet is more important that it has ever been. The time for mom to be a picky eater is not now. Initially we called it stubbornness, but as time moves on we're worried that she's just not comprehending the seriousness of it. Drink water, eat well or end up back in the hospital.
And she did just that last night.
After a minor "blow out" with the ostomy bag, Dad started working with mom to fix it and she became confused and started slurring words and was dizzy. A state that she's gone in and out of during her recovery - a state the doctors and nurses assure us is an indication of dehydration. A test the visiting nurses and Mom's doctor told Dad to do to determine if a hospital trip was needed showed that she needed to go.
Mom is going to be in the hospital for a couple of days to get stronger and re-hydrated. She doesn't want to be there, it makes her cranky. Dad had to give the nurses a refresher on how to deal with mom's ileostomy bag. I'm really proud of him that he has gotten good enough to help explain the process to someone else.
In two weeks she has another appointment with her oncologist. She has two weeks to get strong enough to take the next step in her cancer journey.
We are all pulling for mom to keep making the climb out of this valley, to dig in and do what she has to do to get stronger. The climb is long and difficult. Many have made it before. We are all praying that so can she.
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