Lynn's sister Carrie suggested this title to keep with my recurrent reliance on "H" words, and it is appropriate on this Easter day. We mourn today for my best friend and wife who finally rested from her battle with cancer. I see people often referring to death as "losing" a battle. We didn't get the outcome for which we hoped, but there were many victories. If you know Lynn, you know her competitive spirit. She would never want me to concede defeat for her. And though there is pain and loss against which we struggle, this is only a passing and not an end. Lynn died from her cancer. But it never beat her!
With the most recent diagnosis, I knew from the start that there are really no permanent cures. And remissions are short-lived. So while I hoped for miraculous healing along with everyone else, I vowed that I would do all within my power to safeguard Lynn's dignity as far as possible given the devastating effects to her brain. With so much support from family, close friends and community, I feel like we succeeded. She died in her home, surrounded by family and friends with overflowing love and respect.
I want to share a few stories associated with her last times and my experience with it:
Not to be confused with the last time I wrote about this, we have another story about Jeni's ice cream. Last night, someone brought some home. Lynn opened her mouth wider than she had for some time when offered some. She had a smile on her face as she enjoyed a last taste of her favorite treat. Before this, she was very unresponsive. This was an awakening of monumental proportions at the time, barely half a day before her passing. This experience touches me to the core as I reflect upon Lynn's great capacity to enjoy life.
The next is my experience. This is a somewhat sacred experience that is only one among several that we have shared together. Since it is mine, I feel entitled to share it with you. It brings peace to my soul, and I hope that it does so for you too. At 3:00 this morning, I woke from a deep sleep feeling like I was about to cry. I have done my share of crying before and after Lynn's passing, but this would have been my first time to awaken and cry in the middle of the night. However, just as soon as the feeling came, it was suddenly replaced by a feeling of peace. I lay in bed for not more than a half minute before her mom knocked on the door to tell me that Lynn was declining.
This has been a trying day, and I want to express my heart-felt gratitude to the family and close friends who stood by Lynn and me through it. Thank you also to so many of you who offered encouragement and shared memories.
VIEWING AND MEMORIAL PLANS
We do not know definite times yet. However, we intend to have opportunities for viewing on Wednesday at the Rutherford Funeral Home in Powell. The funeral will follow the next day on Thursday at the Powell L.D.S. chapel on Liberty Rd. We will communicate exact arrangements when they are known.
I know that some of you may wish to travel from afar to join us. I wanted to provide dates so you can make plans.
In lieu of flowers, we would like to invite you to donate to an organization benefitting cancer research. We are trying to locate one to address the complication that took Lynn's life. I have learned that, as primary cancer treatments become more effective to control the initial disease, this leptomeningeal carcinomatosis is starting to become more common. There are significant challenges to treat it, and many medical research papers state early on that current treatments are inadequate. Having made good headway on other aspects of cancer treatment, we would like to see headway made to deal with this complication.
Sunday, March 31, 2013
Wednesday, March 27, 2013
Remember when...
I appreciate the out-pouring of love and support that we've received. Lynn has touched many lives. And I am grateful to have so many still in mine. A number of you have asked if Lynn is accepting visitors. Each of these requests has come with an appropriate expression of understanding that we may or may not be comfortable with many visitors. I want to respond to those requests and provide an avenue to communicate that I hope will be meaningful for both you and Lynn.
Though they've increased in number, requests to visit are not new. I have wished at times that we could throw open the doors and welcome anyone who wants to come. However, Lynn has chosen to take this journey with some deal of privacy. Family and a relatively small number of her closest friends have constantly been by her side.
Anyone only slightly acquainted with Lynn knows that she has lived a life of vitality. Having that slip away would be hard for anyone at any stage in life. It certainly has been so for Lynn. She does not want to be remembered for her sickness but for the fullness of life that preceded it. Now that she is less able to express her wishes, I have no reason to believe that desire has decreased at all. We are therefore going to limit visits.
One of Lynn's former college roommate contacted me. As often happens, though they were once close, they had drifted apart. She asked me to share some fun memories from their days together. I thought that was an appropriate, considerate expression and would like to suggest that you consider also sending your memories. Let's fill her last mortal waking moments with loving and laughing memories.
I feel like I should also provide a note on timing. Based upon comments from doctors and hospice nurses as well as my own researches, it seems clear that Lynn has only a week or two. So please don't wait to send your notes. I promise that we will try to share them with Lynn at times and in ways that bring her comfort and confirm the connection that each of you shared with her.
Though they've increased in number, requests to visit are not new. I have wished at times that we could throw open the doors and welcome anyone who wants to come. However, Lynn has chosen to take this journey with some deal of privacy. Family and a relatively small number of her closest friends have constantly been by her side.
Anyone only slightly acquainted with Lynn knows that she has lived a life of vitality. Having that slip away would be hard for anyone at any stage in life. It certainly has been so for Lynn. She does not want to be remembered for her sickness but for the fullness of life that preceded it. Now that she is less able to express her wishes, I have no reason to believe that desire has decreased at all. We are therefore going to limit visits.
One of Lynn's former college roommate contacted me. As often happens, though they were once close, they had drifted apart. She asked me to share some fun memories from their days together. I thought that was an appropriate, considerate expression and would like to suggest that you consider also sending your memories. Let's fill her last mortal waking moments with loving and laughing memories.
I feel like I should also provide a note on timing. Based upon comments from doctors and hospice nurses as well as my own researches, it seems clear that Lynn has only a week or two. So please don't wait to send your notes. I promise that we will try to share them with Lynn at times and in ways that bring her comfort and confirm the connection that each of you shared with her.
Tuesday, March 26, 2013
"H" is for Hope
I really agonized over how to title this post and decided that this is the right way. We have brought Lynn home and have brought out hospice. This event may appear to be the antithesis of hope. But only from a limited perspective.
This decision was difficult but finally became easier when we understood that the decision to begin hospice is revocable. One compassionate doctor was very articulate, describing it as an insurance status formality that enables us to qualify for certain expanded benefits. The aim is now the comfort of Lynn and everyone involved in her care. Meanwhile on hospice, curative treatment is ceased. Lynn is not strong enough to tolerate the difficult chemo treatments that, based upon our experience so far, would only have slim chances of prolonging her life. However, if she thrives on hospice care and bounces back, we can switch her out of hospice status and resume normal treatment. I've never thought much about hospice, and this is something that I had not understood. Hospice treatment is less about death and more about an emphasis on comfort rather than cure.
Lynn's hospital stay had achieved its purpose to stabilize her even if it was not as much as we would hope. Her one most constant thought was an urgent desire to return home. At times, she would not remember where she was, why she was there, why should couldn't walk or even the fact that she couldn't walk. But she always remembered that she was not where she wanted to be. Now she is, and she is so much more comfortable and happy. We are seeing bright glimpses of her whit and humor!
I feel like I owe it to all who love her who read this to be very clear. We do not expect Lynn to recover. While we can and do hold out hope for some kind of dramatic turn-around, it would be nothing short of a miracle at this point. The more likely miracles will be to find joy in Lynn's memory and to let her influence define us for good. I think of my kids most when I write this.
Lynn is not in pain at all. Right now, she is enjoying some Jeni's ice cream. Seeing her enjoy one of the little comforts is one miracle enough. The next miracle, and the one on which our hope ultimately rests, is that Lynn will peacefully pass and that her spirit will soar to its rest. We can hope that what most defines us does not end at death and that there will one day be a reunion with those who have preceded us.
This decision was difficult but finally became easier when we understood that the decision to begin hospice is revocable. One compassionate doctor was very articulate, describing it as an insurance status formality that enables us to qualify for certain expanded benefits. The aim is now the comfort of Lynn and everyone involved in her care. Meanwhile on hospice, curative treatment is ceased. Lynn is not strong enough to tolerate the difficult chemo treatments that, based upon our experience so far, would only have slim chances of prolonging her life. However, if she thrives on hospice care and bounces back, we can switch her out of hospice status and resume normal treatment. I've never thought much about hospice, and this is something that I had not understood. Hospice treatment is less about death and more about an emphasis on comfort rather than cure.
Lynn's hospital stay had achieved its purpose to stabilize her even if it was not as much as we would hope. Her one most constant thought was an urgent desire to return home. At times, she would not remember where she was, why she was there, why should couldn't walk or even the fact that she couldn't walk. But she always remembered that she was not where she wanted to be. Now she is, and she is so much more comfortable and happy. We are seeing bright glimpses of her whit and humor!
I feel like I owe it to all who love her who read this to be very clear. We do not expect Lynn to recover. While we can and do hold out hope for some kind of dramatic turn-around, it would be nothing short of a miracle at this point. The more likely miracles will be to find joy in Lynn's memory and to let her influence define us for good. I think of my kids most when I write this.
Lynn is not in pain at all. Right now, she is enjoying some Jeni's ice cream. Seeing her enjoy one of the little comforts is one miracle enough. The next miracle, and the one on which our hope ultimately rests, is that Lynn will peacefully pass and that her spirit will soar to its rest. We can hope that what most defines us does not end at death and that there will one day be a reunion with those who have preceded us.
Sunday, March 24, 2013
Another "H" Word: Hospital!
On Friday, Lynn started becoming more confused than before and quickly became unresponsive. We couldn't rouse her. We realized that she had not been getting enough fluids. So whatever else was going on, she was probably dehydrated. We were not going to be able to get enough fluid into her, so we decided to transport her to the hospital.
A couple of days later, she is much more responsive. They've given her fluids intravenously. Meanwhile, they discovered a urinary tract infection and have begun treating her with antibiotics. This kind of infection can cause confusion absent anything else, so we're hopeful that she could get back to her previous baseline once the antibiotics take effect. Scans also do indicate additional swelling in the brain, so we are also increasing her steroid dose (decadron, 16 mg per day). It's sometimes tough to let the nurses manage her medication when I'm so used to being on top of it. It is possible for them to miss things. I've had to push for medications that I knew she had been getting and once caught them miss an important pain med.
Still, Lynn remains far below where she was just a few days ago mentally. She doesn't always know where she is and has seen an assortment of animals while in the hospital -- from squirells to snakes to bugs. Friday night, she was convinced that she was pregnant and was worried that the baby would not be okay. Then, she believed that she had to leave for a wedding (maybe Kate's who was married about a year and a half ago).
Ever since, her most frequent single-minded purpose has been to leave the hospital. Now you can't blame anyone for wanting to leave a hospital. But she has wanted to leave at that instant. She has pulled her IV from her port and has tried to stand (she hasn't been able to walk unassisted for a couple of months). She quickly becomes frustrated when we don't cooperate to help her leave. At one point her mom was hemming some pants for Lauren, and Lynn wanted to put them on so she could walk out. Poor April could not convince her that the pants would not fit (Lauren is 8!), and Lynn was angry at her lack of "cooperation".
So we're hoping to see a rebound if some of her symptoms are caused by the infection. Regardless, this is certainly not where we want to be. Her chemo treatments have been suspended for now. And we will see her neuro-oncologist on Monday.
Thanks to all who have helped in so many ways: watching the kids, doing things at the house, bringing meals and so many expressions of encouragement!
A couple of days later, she is much more responsive. They've given her fluids intravenously. Meanwhile, they discovered a urinary tract infection and have begun treating her with antibiotics. This kind of infection can cause confusion absent anything else, so we're hopeful that she could get back to her previous baseline once the antibiotics take effect. Scans also do indicate additional swelling in the brain, so we are also increasing her steroid dose (decadron, 16 mg per day). It's sometimes tough to let the nurses manage her medication when I'm so used to being on top of it. It is possible for them to miss things. I've had to push for medications that I knew she had been getting and once caught them miss an important pain med.
Still, Lynn remains far below where she was just a few days ago mentally. She doesn't always know where she is and has seen an assortment of animals while in the hospital -- from squirells to snakes to bugs. Friday night, she was convinced that she was pregnant and was worried that the baby would not be okay. Then, she believed that she had to leave for a wedding (maybe Kate's who was married about a year and a half ago).
Ever since, her most frequent single-minded purpose has been to leave the hospital. Now you can't blame anyone for wanting to leave a hospital. But she has wanted to leave at that instant. She has pulled her IV from her port and has tried to stand (she hasn't been able to walk unassisted for a couple of months). She quickly becomes frustrated when we don't cooperate to help her leave. At one point her mom was hemming some pants for Lauren, and Lynn wanted to put them on so she could walk out. Poor April could not convince her that the pants would not fit (Lauren is 8!), and Lynn was angry at her lack of "cooperation".
So we're hoping to see a rebound if some of her symptoms are caused by the infection. Regardless, this is certainly not where we want to be. Her chemo treatments have been suspended for now. And we will see her neuro-oncologist on Monday.
Thanks to all who have helped in so many ways: watching the kids, doing things at the house, bringing meals and so many expressions of encouragement!
Thursday, March 21, 2013
The "H" word and finding the positive
This is Joe. Lynn has been receiving a number of texts but hasn't been very responsive. I think that it's time to update things here. First off, if you are trying to contact us to coordinate something that needs a response, contact me. If you do not have my contact info, leave a comment here and I will find a way to get it to you. Otherwise, feel free to continue to send Lynn messages. On good days, she may still check messages and might enjoy getting messages of encouragement.
Now for the tougher business... Lynn has experienced some new disturbing symptoms. While she has done really well working with physical therapy to regain some of her strength, she has begun to experience cognitive effects, mostly mental confusion. Sometimes she just says things out of the blue that are kind of off the wall. She is up and down; sometimes she is just about all there. But you can always tell that she is in a bit of a fog. There's a lot more that I could say. And tonight she had some more things going on, but we're going to chalk it up to fatigue and see in the morning.
This last Tuesday, we had a few doctor appointments to switch to a new intrathecal chemo drug regimen: methotrexate and cytarabine. Doctors had seen progression while under the first drug and decided to switch. I knew that the failure of one drug treatment is an ominous sign. But Lynn had made clear that she wasn't interested in talking about the negatives of her prognosis. Regardless, one of her doctors decided that he was obligated to tell her that he would recommend hospice if this next line of chemo fails to stop the disease progression. We knew from the start that this is a devastating diagnosis with few treatment options. But it was still a shock to hear that we could be that close to exhausting those options. I have wanted to be informed and have not been able to resist researching Lynn's disease, so I had an idea that we could be near this point. But Lynn was not prepared to hear this hard possibility and took it hard.
I am sorry that the news isn't better. I know that so many of you have been praying and expressing your faith in other ways. We're continuing to focus on the positives. Our doctors are ethically bound to be realistic with us. While realism portends poor chances, it also requires us to see that there is a chance for a good outcome. Our doctors have been adamant that they would not treat if they did not perceive a reasonable chance of benefit. The new drugs may work.
Positive factors in Lynn's favor:
Now for the tougher business... Lynn has experienced some new disturbing symptoms. While she has done really well working with physical therapy to regain some of her strength, she has begun to experience cognitive effects, mostly mental confusion. Sometimes she just says things out of the blue that are kind of off the wall. She is up and down; sometimes she is just about all there. But you can always tell that she is in a bit of a fog. There's a lot more that I could say. And tonight she had some more things going on, but we're going to chalk it up to fatigue and see in the morning.
This last Tuesday, we had a few doctor appointments to switch to a new intrathecal chemo drug regimen: methotrexate and cytarabine. Doctors had seen progression while under the first drug and decided to switch. I knew that the failure of one drug treatment is an ominous sign. But Lynn had made clear that she wasn't interested in talking about the negatives of her prognosis. Regardless, one of her doctors decided that he was obligated to tell her that he would recommend hospice if this next line of chemo fails to stop the disease progression. We knew from the start that this is a devastating diagnosis with few treatment options. But it was still a shock to hear that we could be that close to exhausting those options. I have wanted to be informed and have not been able to resist researching Lynn's disease, so I had an idea that we could be near this point. But Lynn was not prepared to hear this hard possibility and took it hard.
I am sorry that the news isn't better. I know that so many of you have been praying and expressing your faith in other ways. We're continuing to focus on the positives. Our doctors are ethically bound to be realistic with us. While realism portends poor chances, it also requires us to see that there is a chance for a good outcome. Our doctors have been adamant that they would not treat if they did not perceive a reasonable chance of benefit. The new drugs may work.
Positive factors in Lynn's favor:
- The primary cancer was a breast tumor. For whatever reason, metastases from breast cancer portend better responses than others (such as lung cancer or melanoma).
- Lynn does not have significant cancer in other parts of her body. The medical literature states that, when this condition is treated, death usually occurs due to other systemic factors since this tends to be a late stage metastasis. Lynn only has bone metastases which are manageable in the very long term.
- She is young and otherwise healthy. She has demonstrated via her physical therapy progress that she is strong enough to overcome the damage that the cancer has done.
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