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Rosie Baker

This website is provided to help friends and family keep up with updates on the care and condition for Rosemarie "Rosie" Baker, who was diagnosed with brain cancer in Aug[...] read more

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Posted 2015-10-12T15:11:00Z

A Changing of Seasons

Friends -

First, my common theme: please forgive the long delays between posts. There are two main reasons why I have not updated you more recently than now. The first is because Mom's condition has, in many ways, changed - and continues to change - so rapidly that each time I sit down to make an update, there are more pressing things to do, or I'm not quite sure what to say.

There is, however, not much more important than keeping friends and family updated, and as I have responsibility for this, I am sorry that I've not been a better steward of that role than I have over the last month. I'll try to make up for it now.

The last month has been an eventful one. On Sunday, September 20, I sent out my last update where I mentioned what a difficult week Mom had had the week before. It was on Friday, September 11, that we met with her oncologist, who told us how well the treatment seemed to be going, and encouraged us to grant Mom more independence. For those of you who came to the birthday party on the 12th - and I am so grateful to all of you for making such a wonderful day for Rosie (and for us as her family) - you saw this first-hand: she was, for the most part, able to visit and reminisce with each of you who took time to come.

My September 20 update told a far different story. In the intervening week, our attempt at more independence turned into a significant challenge, as she became anxious, confused, and disoriented. This resulted, as I mentioned in my last update, in admission to the hospital on that Sunday, and she remained there for eight days, coming home on September 28.

During the week that Mom was in the hospital, we learned a little more about the circumstances that brought her there. At root was a disheartening revelation: Mom was not responding well to the treatment. In addition to showing increased swelling (likely brought on by the treatment), the MRI failed to show that the tumor was responding favorably to the radiation and chemotherapy. One way to think of it is to imagine that this disease has three gears: forward, neutral, and reverse. The goal of treatment is to throw the gear into reverse, shrinking the tumor. The swelling that is caused by the treatment is offset by medication and by the decreased tumor, which means that the net swelling is typically zero (more swelling from the radiation, less swelling from a smaller tumor). In Mom's case, the treatment appears to be like gently pushing the brake but leaving the gearshift in forward: just like in your car, forward progress is slowed, but not stopped. Because the tumor remains active and developing, it means that there's a double effect: swelling caused by the radiation, with no lessening of the swelling (and in fact some increased swelling) caused by the tumor.

On Wednesday of that week (September 23), I met with Dr. Mayer, Mom's lead oncologist. During that meeting, Dr. Mayer gave me the details I've tried to summarize above, and concluded with her recommendation: because the treatment was not having the desired effect, but was still exacting a significant toll, she advised us to stop treatment and to consider other options. I'll spare you the details, but one of the reasons that I did not write that week is that it was a whirlwind: I consulted with her other doctors (Dr. Hall, the neurosurgeon, and Dr. Ross, the radiation oncologist), asked for other opinions, and attempted to gather as much information as possible. I also spent considerable time with our family and with Laura, praying over our options and trying to make a decision that would provide Mom with the best mix of treatment and comfort.

Late that week, I had a chance to meet Dr. Thomas Ledyard, Associate Medical Director of the Life's Journeys palliative care program at Community Hospitals. Dr. Ledyard and I had a really helpful conversation that helped to frame the options for me. In the end, I was reminded of the commitment that I made at the beginning of this journey: I will not prolong my mother's life for anyone's sake but her own. If the treatment was working - even if it were taking a toll on Mom - I could justify it as providing her with weeks or months of good time after its conclusion. I have always looked at it as an investment - spend time and energy now to reap more time and more energy later. In this situation, that's simply - and sadly - not the case. The medical opinion was that the treatment was taking a toll that was unlikely to be returned to us at all, and that's not an outcome we can live with.

We attempted to talk with Mom about these decisions, and I think that, deep down, she knows what the implications of this decision are, and she accepts them. Mom has told us from the beginning that she does not want to prolong the inevitable, and I have an obligation to honor that wish. In talking with Dr. Ledyard, with family, and in prayer, I found peace in honoring it.

In light of all of these facts, on Sunday, September 27, Laura and I met with the admissions staff at St. Francis Hospice and invoked hospice care for Mom. St. Francis came well-recommended by Dr. Mayer (who also spoke well of the Community Hospital-affiliated hospice), and of course, the staff that would be taking care of Mom all report to Laura. I'll introduce you to them in my next post. This is the second reason for the long delay: this is a decision that we needed all of our resources (and then some) to make, and I needed time to process before I could figure out how to share it here, with all of you.

Since her discharge from Community South on September 28, Mom has largely been at home. We are providing 24-hour care through a variety of methods. Friends and family are handling daytime care, and we have an agency that supplies companionship care to keep an eye on things at night. I am with Mom and Tuesday mornings, Thursday mornings, and most of each weekend (and other odd times where we have gaps through the week), and we have an incredible group of caregivers - volunteer and paid - that each take regular shifts and make this possible. I'll introduce them in my next post, as well. We welcome visitors, but I encourage you to try to reach me first, so I can confirm Mom will be at home and free. Also, we think it might be best if visitors come in small groups (no more than two or three, at the absolute most, at a time), and if you limit your visits to short stays. You are always welcome, but Mom's condition continues to change quickly and unpredictably. For example, as I write this on Monday morning, Mom has slept probably 18 or 19 of the last 24 hours, with brief (30-60 minute) periods of alertness in between. If we know a visitor is coming in advance, we can make arrangements. To be clear, you're always welcome to just pop by - and all are welcome - but Mom's condition makes it important that we place some limits on what that might look like. Your best bet is to check with me or with the caregiver on duty before you come. If you need to know who that is, simply give me a call.

I gave this post the title "A Changing of Seasons," and of course, as all of this transpired, we moved from summer to autumn, a season that my mom has always loved. But I meant the title to connote a different season changing. As the weather has changed outside, we have made room inside for my mom to begin a new season in her life, one that is very likely to be her final season. It is a season that brings us all pain and grief, but it is a season that few of us are fortunate enough to recognize and savor in our own journeys. Just as it is the time to enjoy the harvest outside, it is a time for Mom to recognize and enjoy the bounty of her life, and for all of us to celebrate that with her.  For us, we feel strongly that hospice is not "giving up," but a recognition of Mom's mortality, and a true respect for the peace and certainty that she has - and has had for a long time - that, when she departs our company here, she has a far better place to call home ready for her. Hospice also does not mean that Mom's earthly death is imminent, but only that we recognize that our focus should be on a celebration of all of the joy she has brought so many, and on her peace and her happiness. If treatment brings her pain and does her no good, then this frees us from that pain, and focuses us on what comes next.

We remain continually grateful that you have chosen to walk in this journey with us, and to face - with tears in your eyes, sure (they're in mine as I write this), but with a happiness in your hearts - our next steps unafraid.

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