Last summer Sherry and I installed rain chains at each of the downspouts on our house that we could see from inside windows. Rain chains come in various configurations from the obvious simple chains to the more exotic cups and chain combinations. Their common job is to get the water that collects in the rain gutters down to the ground. They do so by creating water music and temporal water sculptures.
Today provided our rain chains a chance to shine. After we returned home from our early morning radiation treatment, I found excuses to look out the various windows as the relentless rain entertained our chains all day long. The clouds are breaking this evening with cracks of pink coloring the lighter gray between the billowing nimbus. The raindrops no longer pox our pond and the rainwater running down the chains has slowed to measured drips.
Today we also found our raincoats sound. The cold rain riding on a robust southwest wind beat on Sherry’s hood. The rain cadence was muffled by her new fleece cap that she had on underneath. I opted for my Seattle Sombrero and it worked well enough. We both stayed dry.
Walking in the rain was a first. Going from the truck through a parking lot to someplace other than something medical was another one. Sherry’s first store was Great Harvest Bread where she was thrilled to navigate her walker through the door, greet Teresa, and order up some scones. We then went to Office Depot where the objective was exercise as much as anything, but disguised as a search for a new Daytimer address book. They didn’t have the address book, but Sherry was able to tire herself out looking at stationary, pens, etc. A bakery and a stationary store are high on Sherry’s list of favorites and we were able to do both of them.
Today, as they say, was right as rain.
Monday, October 26, 2009
Sunday, October 25, 2009
Benchmarks
We enjoyed a rich Saturday and Sunday. Saturday was sunny and warm. We opened the front room windows and Sherry napped like a rounded cat in a sunbeam streaming through the window. She relished the pungent autumn aroma wafting in from our garden—lavender, damp leaves from red twig dogwood, the faint, sweet odor from the baskets of quince I picked, the satisfying smell of wet, fertile earth.
Sherry’s mobility appears to be improving day by day, little by little. The benchmark reached on Sunday was Sherry moving around our house using her walker without me spotting for her by holding her safety belt. This is a big step. Now I can go outside and do the things that our garden is crying to have done. The pond filters need cleaning, the fruit trees need pruning, the blackberry vines need to be cut back so they don’t collect enough snow to break the supports, the asparagus bed needs to be mulched… Before Sherry climbed over this pinnacle of independence, I could take one of our walkie talkies outside with me and Sherry could have one beside her to call me if she needed me. This worked great for tasks like thinning the green onions, spinach, and lettuce in the cold frames, but kept me from things that required more involvement such as climbing ladders—things that were less prone to accommodate interruption.
With my long time friend Roy Morris, we were able to get the mugho pines on the south side of our driveway pruned. Last winter they bent, laden with heavy snow, over the driveway making it difficult to get to the car. I had let them get too tall. They are shorter now and should bear the snow load with impunity. Plus, I got to learn about the many projects to which Roy is contributing his time and expertise.
Sherry and I both consumed delicious naps Sunday afternoon. Both of us were groggy after napping past the pause that refreshes stage. Still, it was a couple of hours well spent. The broken sleep precipitated by medication schedules seemed to have caught up with us. It was nice to have caught up with it.
Tomorrow the daily regime of radiation therapy begins the Monday through Friday drill. Tuesday and Thursday are OT and PT, and IVs on the chemo floor are on Wednesday. So, it’s begin again. We do so with high hopes for continued improvement. Shrinking, starving, disoriented tumors are our agenda. In the meantime our days, one at a time, are joyous and fulfilling.
Sherry’s mobility appears to be improving day by day, little by little. The benchmark reached on Sunday was Sherry moving around our house using her walker without me spotting for her by holding her safety belt. This is a big step. Now I can go outside and do the things that our garden is crying to have done. The pond filters need cleaning, the fruit trees need pruning, the blackberry vines need to be cut back so they don’t collect enough snow to break the supports, the asparagus bed needs to be mulched… Before Sherry climbed over this pinnacle of independence, I could take one of our walkie talkies outside with me and Sherry could have one beside her to call me if she needed me. This worked great for tasks like thinning the green onions, spinach, and lettuce in the cold frames, but kept me from things that required more involvement such as climbing ladders—things that were less prone to accommodate interruption.
With my long time friend Roy Morris, we were able to get the mugho pines on the south side of our driveway pruned. Last winter they bent, laden with heavy snow, over the driveway making it difficult to get to the car. I had let them get too tall. They are shorter now and should bear the snow load with impunity. Plus, I got to learn about the many projects to which Roy is contributing his time and expertise.
Sherry and I both consumed delicious naps Sunday afternoon. Both of us were groggy after napping past the pause that refreshes stage. Still, it was a couple of hours well spent. The broken sleep precipitated by medication schedules seemed to have caught up with us. It was nice to have caught up with it.
Tomorrow the daily regime of radiation therapy begins the Monday through Friday drill. Tuesday and Thursday are OT and PT, and IVs on the chemo floor are on Wednesday. So, it’s begin again. We do so with high hopes for continued improvement. Shrinking, starving, disoriented tumors are our agenda. In the meantime our days, one at a time, are joyous and fulfilling.
Thursday, October 22, 2009
Enough
A dear friend sent me these words that she has taped to her desk. They were written by PD James, the 80 year old mystery writer:
"The world is a beautiful and terrible place. Deeds of horror are committed every minute and in the end those we love die. If the screams of all earth’s living creatures were a scream of pain, surely it would shake the stars. But we have love. It may seem a frail defense against the horrors of the world, but we must hold fast and believe in it, for it is all that we have."
My reflection on James’ words is that love is enough. In fact the intensity of the last month of our life adventure has demonstrated that love is more than enough. Love has come to us in many forms—many of them unimaginable, unpredictible, many splendored (as the song goes).
Sherry often describes to me how prayers, being held in the light, and thoughts of hope are palpable. She feels like she is being held up, like floating on a compassionate cloud.
Cards, letters, notes, e-mails, blog posts, phone calls, visits, and flowers have been lovingly encouraging and supportive.
I’ve written about the sharing of food and that too is a palpable and delectable expression of love.
The sharing of poems, movies, songs, and books has proven to expand our universe without us having to leave home to do so.
Other expressions have been thoughtful and funny. Garrison Keilor’s "even More Pretty Good Jokes" is definitely in the funny category. Then there are the two fasten-in-the-front bras that arrived on the UPS truck. These came as a response to my blog entry about Sherry reaching the benchmark of being able to fasten her bra behind her back. As far as I can tell that is an incredible reach; one that I am glad I don’t have to do. In any case, love has arrived in DD cups.
I learned last night that two pounds of madjool dates are in the mail. Sherry loves them, and their journey was prompted by our effort to stem Sherry’s weight loss.
Then there have been multiple offers of transportation, lodging for visiting relatives, yard and garden work, improving access in our home, taking our recycling materials to the transfer station, and more--I just can’t recall them all right now.
What we do know is that all of these expressions are authentic, genuine, the real deal. Love has been tendered.
Sherry’s prayer has been that this experience will make her a better person; more loving. My hopes are along the same lines with the specific additions of patience, strength, and courage. Our community is teaching us precisely how to do this.
Love is clearly more than enough, but our gratitude for it can never be…
"The world is a beautiful and terrible place. Deeds of horror are committed every minute and in the end those we love die. If the screams of all earth’s living creatures were a scream of pain, surely it would shake the stars. But we have love. It may seem a frail defense against the horrors of the world, but we must hold fast and believe in it, for it is all that we have."
My reflection on James’ words is that love is enough. In fact the intensity of the last month of our life adventure has demonstrated that love is more than enough. Love has come to us in many forms—many of them unimaginable, unpredictible, many splendored (as the song goes).
Sherry often describes to me how prayers, being held in the light, and thoughts of hope are palpable. She feels like she is being held up, like floating on a compassionate cloud.
Cards, letters, notes, e-mails, blog posts, phone calls, visits, and flowers have been lovingly encouraging and supportive.
I’ve written about the sharing of food and that too is a palpable and delectable expression of love.
The sharing of poems, movies, songs, and books has proven to expand our universe without us having to leave home to do so.
Other expressions have been thoughtful and funny. Garrison Keilor’s "even More Pretty Good Jokes" is definitely in the funny category. Then there are the two fasten-in-the-front bras that arrived on the UPS truck. These came as a response to my blog entry about Sherry reaching the benchmark of being able to fasten her bra behind her back. As far as I can tell that is an incredible reach; one that I am glad I don’t have to do. In any case, love has arrived in DD cups.
I learned last night that two pounds of madjool dates are in the mail. Sherry loves them, and their journey was prompted by our effort to stem Sherry’s weight loss.
Then there have been multiple offers of transportation, lodging for visiting relatives, yard and garden work, improving access in our home, taking our recycling materials to the transfer station, and more--I just can’t recall them all right now.
What we do know is that all of these expressions are authentic, genuine, the real deal. Love has been tendered.
Sherry’s prayer has been that this experience will make her a better person; more loving. My hopes are along the same lines with the specific additions of patience, strength, and courage. Our community is teaching us precisely how to do this.
Love is clearly more than enough, but our gratitude for it can never be…
Tuesday, October 20, 2009
The Heavy Wait
The ambiance in the Radiation Therapy Waiting Room at the Cancer Center is heavy with grim anticipation. It is a quiet, somber place.
Yesterday afternoon, after Sherry was called for her time alone in that coldly mechanical room with hot invisible beams being projected into her head, I was in the waiting room with a young woman who had accompanied an older, rather sullen gentleman who had also been called for radiation. We were the only ones there and her glance at me made the silence particularly awkward.
“Been a long day?” I asked. She smiled weakly and told me that she and her grandfather had been there all day.
“Did you travel far? I continued.
“From Sandpoint.” she replied, “It’s quite a drive with the construction, but it isn’t too bad. My mother and I trade off driving my grandfather down.”
I thought about how that aligned with our drive of about 10 minutes—and that’s against the wind and catching the traffic lights wrong.
Today, the waiting room was nearly full. Maybe four or five chairs were empty. This meant that it was impossible to be seated unless it was right next to someone else. I had learned that the waiting room protocol was that when you took a seat it was polite to leave an empty chair between you and whoever was already seated. Sherry and I did find two seats together and sandwiched ourselves in between occupied chairs.
I asked Sherry if she wanted anything. The Cancer Center has the room well stocked with coffee, tea, various instant beverages, and a refrigerator filled with juices and a variety of flavors of Ensure. I thought of Sherry’s weight loss and asked her if she wanted an Ensure. She declined initially, but I pressed on. “Have you ever had it before? Why don’t you try it?” She relented, and I went to the refrigerator, carefully sliding by a woman hunched over in her wheel chair. She was reading an article on eye make-up in a fashion magazine. I scanned the options in the refrigerator. I quickly dismissed the strawberry Ensure, but stopped at the vanilla that promised to be “home made flavor.” I brought it over to Sherry.
She sipped it. “Not bad! If it were hot it would be like a latte, or at least a steamer. I wonder if they have a microwave around here?” I sensed that the lack of filters brought on by her daily doses of steroids might be kicking in. Without addressing anyone in particular, but looking at me, Sherry announced, “They certainly should have a microwave around here, they microwave everything else!”
Everyone else in particular heard the words and pondered the thought. Smiles softened the space between, and a fresh sense of us warmed the room. It’s not that everyone got up and danced or anything like that, but people did begin to talk with each other.
When Sherry returned from her turn in the microwave, and we prepared to go, good byes, and have a nice days were exchanged. Then we drove home, thankful for the 10 minute drive and for the access we have to state of the art treatment.
Yesterday afternoon, after Sherry was called for her time alone in that coldly mechanical room with hot invisible beams being projected into her head, I was in the waiting room with a young woman who had accompanied an older, rather sullen gentleman who had also been called for radiation. We were the only ones there and her glance at me made the silence particularly awkward.
“Been a long day?” I asked. She smiled weakly and told me that she and her grandfather had been there all day.
“Did you travel far? I continued.
“From Sandpoint.” she replied, “It’s quite a drive with the construction, but it isn’t too bad. My mother and I trade off driving my grandfather down.”
I thought about how that aligned with our drive of about 10 minutes—and that’s against the wind and catching the traffic lights wrong.
Today, the waiting room was nearly full. Maybe four or five chairs were empty. This meant that it was impossible to be seated unless it was right next to someone else. I had learned that the waiting room protocol was that when you took a seat it was polite to leave an empty chair between you and whoever was already seated. Sherry and I did find two seats together and sandwiched ourselves in between occupied chairs.
I asked Sherry if she wanted anything. The Cancer Center has the room well stocked with coffee, tea, various instant beverages, and a refrigerator filled with juices and a variety of flavors of Ensure. I thought of Sherry’s weight loss and asked her if she wanted an Ensure. She declined initially, but I pressed on. “Have you ever had it before? Why don’t you try it?” She relented, and I went to the refrigerator, carefully sliding by a woman hunched over in her wheel chair. She was reading an article on eye make-up in a fashion magazine. I scanned the options in the refrigerator. I quickly dismissed the strawberry Ensure, but stopped at the vanilla that promised to be “home made flavor.” I brought it over to Sherry.
She sipped it. “Not bad! If it were hot it would be like a latte, or at least a steamer. I wonder if they have a microwave around here?” I sensed that the lack of filters brought on by her daily doses of steroids might be kicking in. Without addressing anyone in particular, but looking at me, Sherry announced, “They certainly should have a microwave around here, they microwave everything else!”
Everyone else in particular heard the words and pondered the thought. Smiles softened the space between, and a fresh sense of us warmed the room. It’s not that everyone got up and danced or anything like that, but people did begin to talk with each other.
When Sherry returned from her turn in the microwave, and we prepared to go, good byes, and have a nice days were exchanged. Then we drove home, thankful for the 10 minute drive and for the access we have to state of the art treatment.
Monday, October 19, 2009
Weighing In
The scales at the Cancer Center when Sherry weighed in today showed that she had lost 5 pounds since Friday. It's not that she hasn't been eating, and eating a lot of fresh, healthy food. I have to find a way to turn that around. We will start with the dietician at the Cancer Center.
I have been enriching her morning oatmeal with fruit, nuts, whey powder, and the usual yoghurt and cottage cheese that she likes, I am going to look for some malt powder to add to the milk she drinks and will serve apple slices with almond butter between meals.
I have been enriching her morning oatmeal with fruit, nuts, whey powder, and the usual yoghurt and cottage cheese that she likes, I am going to look for some malt powder to add to the milk she drinks and will serve apple slices with almond butter between meals.
Sunday, October 18, 2009
Routine
I have found uneasy comfort in routine. Managing the daily activities of eating, sleeping, toileting, medicating, and generally tidying up provides me with a sense of order and the delusion of control. The trouble is that our routine is essentially a response to the external, or the imposed. It is easy to allow the recurring needs for basic care and maintenance take center stage. When we allow these to become the whole show, the days run one into the other with little to distinguish them, one from the other.
It’s been 32 days since Sherry’s brain surgery when the biopsy was taken and the diagnosis given. Time in. Time out. So many days, so soon.
Life seems to happen in the cracks between the necessary and mundane. A poem read, a song heard, a phone call from a friend, a card, a visit are all the sort of things that makes our days count; breathes life into them.
We also have come to distinguish between routine and ritual. Each morning Sherry lights a candle given to her by my sister, Marla Morrow. The candle is in a sterling silver candlestick holder which was a wedding present to Sherry’s parents, Edith and Clarence, from Sherry’s paternal grandmother. While the candle burns Sherry focuses on five things for which she is grateful. It doesn’t take much of the candle for her to pick five out of the multitude of gifts she is receiving. This ritual puts perspective into life.
Still, there are dark times. I believe that our grieving, when it clouds routine and ritual shrouding life, is not based on fear of death, rather from an awareness of what we cannot do, or perceive that we will not be able to do. This thinking shifts our focus away from what we can do to fully live our lives and to fulfill our life together. The antidote is to focus on what we can do. Simply doing this seems to lift the clouds.
It’s been 32 days since Sherry’s brain surgery when the biopsy was taken and the diagnosis given. Time in. Time out. So many days, so soon.
Life seems to happen in the cracks between the necessary and mundane. A poem read, a song heard, a phone call from a friend, a card, a visit are all the sort of things that makes our days count; breathes life into them.
We also have come to distinguish between routine and ritual. Each morning Sherry lights a candle given to her by my sister, Marla Morrow. The candle is in a sterling silver candlestick holder which was a wedding present to Sherry’s parents, Edith and Clarence, from Sherry’s paternal grandmother. While the candle burns Sherry focuses on five things for which she is grateful. It doesn’t take much of the candle for her to pick five out of the multitude of gifts she is receiving. This ritual puts perspective into life.
Still, there are dark times. I believe that our grieving, when it clouds routine and ritual shrouding life, is not based on fear of death, rather from an awareness of what we cannot do, or perceive that we will not be able to do. This thinking shifts our focus away from what we can do to fully live our lives and to fulfill our life together. The antidote is to focus on what we can do. Simply doing this seems to lift the clouds.
Thursday, October 15, 2009
The End of The Beginning
Today was the first round of radiation treatment. Sherry’s tumors were bombarded by death rays. The whole thing seems so Star Wars with Darth Vader commanding the cancer cells and Luke Skywalker riding isotopes to slay the evil invaders. For images I could go with Jabberwocky and the vorpal blade, or with Odysseus, or with so many other renditions of the same theme. But I think that the technology, the machinery, the control panel outside the radiation room call for, if not Star Wars, at least Mr. Spock.
I know that the side effects of radiation and chemo are cumulative. I rejoice at the slight impact on Sherry today, but with a hand on trepidation. The radiation is likely to cause more swelling which will intensify the symptoms. We are likely to be back to using the wheel chair as opposed to walking with a walker, or with me just holding onto her safety belt and she navigates around our home from chair to recliner, to toilet, to bed. If the symptoms do reoccur at least we had a chance to practice the more difficult transfers while Sherry was in the hospital recovering from surgery. Progress isn’t always in a straight line.
I have received excellent counsel. “Give Hospice a call” is the message from a couple of loving sources. While I know a bit about the range of services Hospice provides, it remains difficult for me to make that call. Sherry and I both know how nastily glioblastoma operates, and that the outcome is predictable if not inevitable. Still, calling Hospice is like beginning the last chapter of a wonderful book. The story has been engagingly glorious and I don’t want it to end. Starting the chapter, even though I know that Hospice could make it a better one, still moves us closer to The End.
I know that the side effects of radiation and chemo are cumulative. I rejoice at the slight impact on Sherry today, but with a hand on trepidation. The radiation is likely to cause more swelling which will intensify the symptoms. We are likely to be back to using the wheel chair as opposed to walking with a walker, or with me just holding onto her safety belt and she navigates around our home from chair to recliner, to toilet, to bed. If the symptoms do reoccur at least we had a chance to practice the more difficult transfers while Sherry was in the hospital recovering from surgery. Progress isn’t always in a straight line.
I have received excellent counsel. “Give Hospice a call” is the message from a couple of loving sources. While I know a bit about the range of services Hospice provides, it remains difficult for me to make that call. Sherry and I both know how nastily glioblastoma operates, and that the outcome is predictable if not inevitable. Still, calling Hospice is like beginning the last chapter of a wonderful book. The story has been engagingly glorious and I don’t want it to end. Starting the chapter, even though I know that Hospice could make it a better one, still moves us closer to The End.
Being Fed
Mealtime at our home has been an epicurean adventure. The meals that arrive regularly from dear friends nurture us on many levels. Foremost is the kindness and caring that comes with the preparation and presentation of food. Sharing of food is primordial. It touches deep places, ancient places. The breaking of bread is archetypal. Companionship has pan, bread, at its center. The sharing of food, then, affirms connection, community, and caring.
There is an aesthetic aspect to food as well. What a delight to sample the culinary inspiration from so many kitchens, from so many hearts. The cuisine varies from comforting rustic to exotic ethnic, all of which provide an array of smells, tastes, and textures. WOW!
We are grateful and honored to be cared for and to be fed in body, mind, and spirit.
There is an aesthetic aspect to food as well. What a delight to sample the culinary inspiration from so many kitchens, from so many hearts. The cuisine varies from comforting rustic to exotic ethnic, all of which provide an array of smells, tastes, and textures. WOW!
We are grateful and honored to be cared for and to be fed in body, mind, and spirit.
Tuesday, October 13, 2009
Medical Information
Here are some links that Jes sent to help us to understand more about glioblastoma. It is more that I ever wanted to know, but there it is...
http://www.seattlecca.org/client/08-08-046-NL-SNO-Newsletter.pdf
http://www.seattlecca.org/client/08-09-131-MN%20Glioblastoma%20MN_Comp.pdf
https://www.seattlecca.org/patientpowerwebcast-detail.cfm?PatientPowerWebcastID=2
http://www.seattlecca.org/client/08-08-046-NL-SNO-Newsletter.pdf
http://www.seattlecca.org/client/08-09-131-MN%20Glioblastoma%20MN_Comp.pdf
https://www.seattlecca.org/patientpowerwebcast-detail.cfm?PatientPowerWebcastID=2
A New Day
Sherry began today with a 7:00 am occupational therapy session and an 8:00 am physical therapy session. 7:00 am isn't exactly crack of dawn early, but given that it takes us about an hour and a half to get up, get dressed, have breakfast, and generally get going, 7:00 am is early enough. The sessions went well. I am heartened by Sherry's committment and hard work, and by the wonderful support, encouragement, and expertise the therapists at the McGrane Center contribute to Sherry's well being.
After the sessions we went to the pharmacy to pick up new prescriptions. We were earlier than the pharmacy opened so we enjoyed Starbuck's coffee--me the straight stuff, and Sherry an exotic tall decaf soy ristrado. I had to repeat that back to her several times before I got it right. I still have trouble with the ristrado part. I doubt that I am even spelling it right. Nevertheless, sipping the hot drinks while we were sitting in the cab of our truck watching the north wind billow the flags and the trees against a bright sky was lovely. After the pharmacy opened we got the pills and, instead of going right home, we drove around the dike road. Fall illuminates the beauty of the North Idaho College campus. The lake was cold quicksilver ruffled by the wind, and framed by trees seemingly reluctant to give up their green.
2:00 pm came quickly. At our appointment at the Cancer Center we learned about the chemo treatment that Sherry will begin. Tomorrow at 10:00 am she will be given Avastin, a drug that if I understand it correctly targets the blood supply to cancer cell and reduces the swelling, edema, around the tumors. Because the drug is selective it does less damage to other organs than the high doses of steroids that Sherry is currently taking. Plus, it is more effective. Radiation will have its rigors which remain unknown other than the general symptoms Sherry is likely to experience. We are still talking about palliative intervention and not a curative one at least from a medical perspective. However, there is the appearance of duration with a relatively moderate impact on Sherry.
In any case, the season, the geese, the water, and the wind call to us today with hopes for more fulfilling tomorrows.
After the sessions we went to the pharmacy to pick up new prescriptions. We were earlier than the pharmacy opened so we enjoyed Starbuck's coffee--me the straight stuff, and Sherry an exotic tall decaf soy ristrado. I had to repeat that back to her several times before I got it right. I still have trouble with the ristrado part. I doubt that I am even spelling it right. Nevertheless, sipping the hot drinks while we were sitting in the cab of our truck watching the north wind billow the flags and the trees against a bright sky was lovely. After the pharmacy opened we got the pills and, instead of going right home, we drove around the dike road. Fall illuminates the beauty of the North Idaho College campus. The lake was cold quicksilver ruffled by the wind, and framed by trees seemingly reluctant to give up their green.
2:00 pm came quickly. At our appointment at the Cancer Center we learned about the chemo treatment that Sherry will begin. Tomorrow at 10:00 am she will be given Avastin, a drug that if I understand it correctly targets the blood supply to cancer cell and reduces the swelling, edema, around the tumors. Because the drug is selective it does less damage to other organs than the high doses of steroids that Sherry is currently taking. Plus, it is more effective. Radiation will have its rigors which remain unknown other than the general symptoms Sherry is likely to experience. We are still talking about palliative intervention and not a curative one at least from a medical perspective. However, there is the appearance of duration with a relatively moderate impact on Sherry.
In any case, the season, the geese, the water, and the wind call to us today with hopes for more fulfilling tomorrows.
Monday, October 12, 2009
Perspective
Amazing how perception and perspective walk hand in hand.
Today, with some anxiety we went to Sherry's 10:00 am appointment to do the radiation simulation at the Cancer Center, followed by an 11:40 appointment with the Oncologist. Our near future balanced on the fulcrum of whether or not treatment (radiation and chemotherapy) would indeed benefit Sherry, or if the rigors of enduring these processes would not equate with the benefit.
All of the nurses and doctors commented on how good Sherry looked today. I thought it was the teal blue rayon turtle neck, but their basis of comparison was late last Friday afternoon when Sherry was unable to bear any weight on her left leg. Now she could stand on the scale to be weighed, and walk using her walker.
We were given a schedule for 6 weeks of radiation therapy, plus chemo therapy will start tomorrow, hopefully using a new drug that should be easier on Sherry. We left the Cancer Center merrily, merrily, finding humor in the irony of being happy about getting radiation and chemo therapy. We hoped that the 6 week schedule was a promise.
We were told by the radiologist to think of food as medicine, something we had already learned from reading Michael Pollan, so we celebrated with a gourmet lunch of chicken cattiatore with homemade pasta (now the benchmark for the best pasta I have ever eaten), fresh green salad, and fresh pressed apple cider. Good medicine indeed, that weighs heavily on the scale. Just what the doctor ordered.
Today, with some anxiety we went to Sherry's 10:00 am appointment to do the radiation simulation at the Cancer Center, followed by an 11:40 appointment with the Oncologist. Our near future balanced on the fulcrum of whether or not treatment (radiation and chemotherapy) would indeed benefit Sherry, or if the rigors of enduring these processes would not equate with the benefit.
All of the nurses and doctors commented on how good Sherry looked today. I thought it was the teal blue rayon turtle neck, but their basis of comparison was late last Friday afternoon when Sherry was unable to bear any weight on her left leg. Now she could stand on the scale to be weighed, and walk using her walker.
We were given a schedule for 6 weeks of radiation therapy, plus chemo therapy will start tomorrow, hopefully using a new drug that should be easier on Sherry. We left the Cancer Center merrily, merrily, finding humor in the irony of being happy about getting radiation and chemo therapy. We hoped that the 6 week schedule was a promise.
We were told by the radiologist to think of food as medicine, something we had already learned from reading Michael Pollan, so we celebrated with a gourmet lunch of chicken cattiatore with homemade pasta (now the benchmark for the best pasta I have ever eaten), fresh green salad, and fresh pressed apple cider. Good medicine indeed, that weighs heavily on the scale. Just what the doctor ordered.
Sunday, October 11, 2009
Sunday, Sunday
The 6:00 am alarm for Sherry's medication found me groggy and Sherry sitting up in bed. She woke early and her active mind kept her awake. This difficulty sleeping and the racing mind seem to be a side effect of the steroids. We are thankful for them, since they reduce the swelling and ward off the horrid symptoms.
Sherry took her pill and asked for an English muffin with peanut butter. I took the muffin out of the toaster, the peanut butter out of the refrigerator, and then spread it carefully to the edges. The hot muffin released the rich, earthy fragrance of the peanuts. Sherry ate it sitting up in bed then lay back down. I crawled back into be to be with her and we were both soon asleep.
Waking revealed for me the delicious awareness that I couldn't tell where I began and Sherry ended. I gradually became more aware of the body boundaries. I thought of lines from a Theodore Roethke poem, "I sleep to wake, and take my waking slow."
I used to think that getting married was something you did rather than something you became. Ours certainly becomes me.
Sherry took her pill and asked for an English muffin with peanut butter. I took the muffin out of the toaster, the peanut butter out of the refrigerator, and then spread it carefully to the edges. The hot muffin released the rich, earthy fragrance of the peanuts. Sherry ate it sitting up in bed then lay back down. I crawled back into be to be with her and we were both soon asleep.
Waking revealed for me the delicious awareness that I couldn't tell where I began and Sherry ended. I gradually became more aware of the body boundaries. I thought of lines from a Theodore Roethke poem, "I sleep to wake, and take my waking slow."
I used to think that getting married was something you did rather than something you became. Ours certainly becomes me.
Saturday, October 10, 2009
Saturday Morning
The beefed up doses of steroids and the return to the regular schedule of 4 doses a day had the positive effect of reducing some of the brain swelling. Enough that Sherry can again use the walker around the house with me spotting for her. She even had a soothing shower this morning where she again gave thanks to the wonderful man who re-modeled our bathroom and the workmen that installed the tile--Ron, Jimmy D, and the two Toms! We celebrated that we know everyone who has worked on our home by name.
So, you can see that our focus has expanded from the terror of lost mobility, and from the Richter Scale shift in Sherry's actuarial table. Her's is a reasonably known shift. What it is for the rest of us remains unknown.
The day is a perfect fall day--cold and crisp in the morning breaking into a bright, blue day. I recall an old Glen Yarburough song, "It's golden under the sun, and silver under the moon..." Indeed it is, and we are living it soon.
So, you can see that our focus has expanded from the terror of lost mobility, and from the Richter Scale shift in Sherry's actuarial table. Her's is a reasonably known shift. What it is for the rest of us remains unknown.
The day is a perfect fall day--cold and crisp in the morning breaking into a bright, blue day. I recall an old Glen Yarburough song, "It's golden under the sun, and silver under the moon..." Indeed it is, and we are living it soon.
Friday, October 9, 2009
More Terrible Than Wonderful
Sherry had a sleepless night last night puncuated by bouts of nausea. Her motor skills, particularly in her left leg deteriorated significantly. Just yesterday I watched her during her physical therapy session walk between parallel bars over hurdles about 6 inches tall and a foot an a half apart. She could pick up her left leg and successfully navigate these obstacles. Today was a completely different story. Instead of just spotting for her by holding the safety belt I needed to support her and help lift her out of her wheel chair.
Of course this raised red flags. Again I took the high road in interpreting these symptoms: She's overly tired from a long day. Maybe a touch of food poisoning. Maybe the flu or at least a reaction to the flu shot and pnemonia shot she got on Wednesday. Or ominously, none of the above
I called our oncologist's nurse for guidance. She consulted with the oncologist and he ordered a CT scan and some lab work. So, we went in for a 2:00 pm appointment, and by 3:30 or so we were in an examination room waiting for the oncologist to provide us with the results of the tests and his intrepretation of them.
He reported that the tumors were increasing in number and growing in size at a rapid rate. Our perception of months and possibly years,degraded to days and weeks.
We have another appointment with the radio oncologist on Monday followed by an appointment with the oncologist when we will discuss treatment options in light of the new information about the agressiveness of these tumors.
We had hopes for a more leisurely planning time, living time. That hope appears to have eroded to a smaller, but as yet unknown time.
Of course this raised red flags. Again I took the high road in interpreting these symptoms: She's overly tired from a long day. Maybe a touch of food poisoning. Maybe the flu or at least a reaction to the flu shot and pnemonia shot she got on Wednesday. Or ominously, none of the above
I called our oncologist's nurse for guidance. She consulted with the oncologist and he ordered a CT scan and some lab work. So, we went in for a 2:00 pm appointment, and by 3:30 or so we were in an examination room waiting for the oncologist to provide us with the results of the tests and his intrepretation of them.
He reported that the tumors were increasing in number and growing in size at a rapid rate. Our perception of months and possibly years,degraded to days and weeks.
We have another appointment with the radio oncologist on Monday followed by an appointment with the oncologist when we will discuss treatment options in light of the new information about the agressiveness of these tumors.
We had hopes for a more leisurely planning time, living time. That hope appears to have eroded to a smaller, but as yet unknown time.
Thursday, October 8, 2009
Treatment
Sherry begins chemotherapy on Tuesday, October 13th and radiation on Thursday, October 15th. There is much we don't know about this. We do know that her immune system will be compromised, but don't know how this will impact our ability to entertain visitors. Mostly, we don't know how the treatment will treat the tumors and how Sherry's body will respond. It appears that she will have six weeks of radiation, five days a week here at the Cancer Center at KMC. Chemo will be intersperse. How that will happen will soon be revealed.
We do know that Jes will return on October 13th along with my sister, Marla, and Steve Morrow. That is much to celebrate.
I am grateful that I am retired. I have tried to imagine trying to respond to the immediacy and intensity of this situation while being pulled by work responsibilities. Now I can do exactly as I want to do, and honored by what I get to do. I hope for the strength, courage, and patience to do it well. Again the Beatles resonate: "I get by with a little help from my friends..." I will do much better than just get by. I will soar with the abundance of help I am receiving.
We do know that Jes will return on October 13th along with my sister, Marla, and Steve Morrow. That is much to celebrate.
I am grateful that I am retired. I have tried to imagine trying to respond to the immediacy and intensity of this situation while being pulled by work responsibilities. Now I can do exactly as I want to do, and honored by what I get to do. I hope for the strength, courage, and patience to do it well. Again the Beatles resonate: "I get by with a little help from my friends..." I will do much better than just get by. I will soar with the abundance of help I am receiving.
Home
The immediate challenge is the neglect and lack of coordination Sherry's left side. With occupational and physical therapy two days a week as an outpatient at the McGrane Center we can see improvement. Sherry can now walk, with me spotting for her, from the bedroom to the dining room table. She can floss her teeth and fasten her bra behind her back--that feat of dexterity dazzles me and must signify something of stellar significance.
We dine on gourmet meals every night as friends bring delectables from their kitchens to our table. It's like going to elegant restruants without leaving home or changing out of our tee shirts and sneakers.
We have an electric wheel chair and a ramp designed and constructed by what must be a reincarnated Egyptian Pharaoh--there was no heavy lifting involved. Our blackberries were plucked from the briars and came back in jars of fresh jam. Sherry has a new laptop delivered loaded and ready to retrive her e-mail (sfagerness@hotmail.com) and edit her photos.
Good cheer abounds and the abundance of the season permeates.
We dine on gourmet meals every night as friends bring delectables from their kitchens to our table. It's like going to elegant restruants without leaving home or changing out of our tee shirts and sneakers.
We have an electric wheel chair and a ramp designed and constructed by what must be a reincarnated Egyptian Pharaoh--there was no heavy lifting involved. Our blackberries were plucked from the briars and came back in jars of fresh jam. Sherry has a new laptop delivered loaded and ready to retrive her e-mail (sfagerness@hotmail.com) and edit her photos.
Good cheer abounds and the abundance of the season permeates.
Re-Hab and Home
On Tuesday, September 22nd Sherry was transferred to the Re-Hab Unit at Kootenai Health. The first night she was in a room with three other people and it was the first night that I do not stay with her. I felt that my presence would intrude on the others, plus I had many things to care for at home.
On the 23rd Sherry was transferred to an apartment-like room that has a bathroom, a fully equipped kitchen, a bedroom, and even a pleasant patio area bordering a garden. I was encouraged to stay and to learn transferring and other caretaking techniques from the OTs, PTs, and SLPs. The goal was to make Sherry OT safe as they say. Before very long I was allowed to do the transfers myself. I felt more confident in my caretaking ability and learned that there is a correct way that was not always aligned with the way I initially thought was right.
On Friday, September 25th Sherry had an appointment with the radiation oncologist to discuss treatment options. They ranged from doing nothing to pursuing an aggressive modality that included both radiation and chemo therapy. While none of the treatments will lead to a cure, palative treatment can support the quantity and quality of life. The agressive treatment seemed preferable, though that could change depending upon Sherry's response to it. There were still many unknowns, and to dwell on them created an empty place in the bottom of my stomach.
When we returned to the Re-Hab Unit we were met by the social worker and the KMC Chaplain. We learned that Sherry could stay an additonal day in Re-Hab to allow me to ready our home for Sherry's homecoming. In the apartment was a new walker and wheel chair. KMC has elected to pay for the additional night even though Blue Cross of Idaho did not deem it necesary. This illustrates the difference between a community hospital and a faceless HMO.
On Saturday, September 26th Sherry and I drove up to our home. We went immediately to the bench on the deck overlooking our pond and basked in the autumn sun. Home, healing home.
While we believe we received the standard of care at Kootenai Medical Center the benchmarks were significant though somehow smaller. We celebrated them just the same: coming out of recovery into the ICU; getting unhooked from the monitors and transferred from ICU to the Neuro-Ortho Unit; getting the catheter and IVs out, getting an unrestricted diet and so on were steps forward, but none rivaled coming home.
On the 23rd Sherry was transferred to an apartment-like room that has a bathroom, a fully equipped kitchen, a bedroom, and even a pleasant patio area bordering a garden. I was encouraged to stay and to learn transferring and other caretaking techniques from the OTs, PTs, and SLPs. The goal was to make Sherry OT safe as they say. Before very long I was allowed to do the transfers myself. I felt more confident in my caretaking ability and learned that there is a correct way that was not always aligned with the way I initially thought was right.
On Friday, September 25th Sherry had an appointment with the radiation oncologist to discuss treatment options. They ranged from doing nothing to pursuing an aggressive modality that included both radiation and chemo therapy. While none of the treatments will lead to a cure, palative treatment can support the quantity and quality of life. The agressive treatment seemed preferable, though that could change depending upon Sherry's response to it. There were still many unknowns, and to dwell on them created an empty place in the bottom of my stomach.
When we returned to the Re-Hab Unit we were met by the social worker and the KMC Chaplain. We learned that Sherry could stay an additonal day in Re-Hab to allow me to ready our home for Sherry's homecoming. In the apartment was a new walker and wheel chair. KMC has elected to pay for the additional night even though Blue Cross of Idaho did not deem it necesary. This illustrates the difference between a community hospital and a faceless HMO.
On Saturday, September 26th Sherry and I drove up to our home. We went immediately to the bench on the deck overlooking our pond and basked in the autumn sun. Home, healing home.
While we believe we received the standard of care at Kootenai Medical Center the benchmarks were significant though somehow smaller. We celebrated them just the same: coming out of recovery into the ICU; getting unhooked from the monitors and transferred from ICU to the Neuro-Ortho Unit; getting the catheter and IVs out, getting an unrestricted diet and so on were steps forward, but none rivaled coming home.
Gratitude
Intensity burns away the superfulous and reveals the significant.
Loving relationships = wealth
Gratitude and forgiveness are essential elements.
That seems to be about it.
Upon returning home, my sister Cheryll sent this Mary Oliver poem:
The Place I Want to Get Back To
The Place I want to get back to
is where
in the pinewoods
in the moments between
the darkness
and first light
two deer
came walking down the hill
and when they saw me
they said to each other, okay,
this one is okay,
let's see who she is
and why she is sitting
on the ground, like that,
so quiet, as if
asleep, or in a dream,
but, anyway, harmless;
and so they come
on their slender legs
and gazed upon me
not unlike the way
I go out to the dunes and look
and look and look
into the faces of the flowers;
and then one of them leaned forward
and nuzzled my hand, and what can my life
bring me that could exceed
that brief moment?
For twenty years
I have gone every day to the same woods,
not waiting, exactly, just lingering.
Such gifts, bestowed,
can't be repeated.
If you want to talk about this
come to visit. I live in the house
near the corner, which I have named
Gratitude.
I am truly grateful for the rich and full life I have lived. Sherry is grateful for her life and wouldn't change a thing even if she could. We have been nuzzled by the deer.
It is a blessing to be able to prepare for one's death.
Loving relationships = wealth
Gratitude and forgiveness are essential elements.
That seems to be about it.
Upon returning home, my sister Cheryll sent this Mary Oliver poem:
The Place I Want to Get Back To
The Place I want to get back to
is where
in the pinewoods
in the moments between
the darkness
and first light
two deer
came walking down the hill
and when they saw me
they said to each other, okay,
this one is okay,
let's see who she is
and why she is sitting
on the ground, like that,
so quiet, as if
asleep, or in a dream,
but, anyway, harmless;
and so they come
on their slender legs
and gazed upon me
not unlike the way
I go out to the dunes and look
and look and look
into the faces of the flowers;
and then one of them leaned forward
and nuzzled my hand, and what can my life
bring me that could exceed
that brief moment?
For twenty years
I have gone every day to the same woods,
not waiting, exactly, just lingering.
Such gifts, bestowed,
can't be repeated.
If you want to talk about this
come to visit. I live in the house
near the corner, which I have named
Gratitude.
I am truly grateful for the rich and full life I have lived. Sherry is grateful for her life and wouldn't change a thing even if she could. We have been nuzzled by the deer.
It is a blessing to be able to prepare for one's death.
Turning a Corner
Friday, September 18th the neurosugeon made his morning rounds. He brought Sherry and me the final results from the pathologist. The final report was the same as the preliminary: glioplastoma, level 4. While he could answer some of the questions, the big ones remained a mystery.
After the doctor left I cradled Sherry in my arms with as much of my body as I could get in the narrow hospital bed next to hers.
She whispered to me, "I know about taking a leap of faith, but I was pushed."
We again found intimacy in the early morning hours. "We have another day!" became our waking mantra. We also used a lot of the aloe treated tissue that Marie had thoughtfully provided. Our grief made a pot of tear soup.
Sherry celebrated her 64th birthday on the 19th. We gave a resounding affirmative rejoiner to the Beatles' question. "Will you still need me, will you still feed me when I'm sixty-four?"
Friends brought a sprig of lavender and a swag of sage. Their fragrance cut through the antiseptic smell of the hospital, and the next morning our pre-dawn intimacy found exhubrance in our "We have another day!" mantra. We are alive. Life is good. Life is for living.
Sherry told me that she could not retreat into a "Why me?" pool of self pity. Her reply was simply, "Why not?" She refused to remove herself from the shuffle of events that occur in all of our lives at one time or another. Hearing her express this context was both an ilumination and comfort for me. Why not?
After the doctor left I cradled Sherry in my arms with as much of my body as I could get in the narrow hospital bed next to hers.
She whispered to me, "I know about taking a leap of faith, but I was pushed."
We again found intimacy in the early morning hours. "We have another day!" became our waking mantra. We also used a lot of the aloe treated tissue that Marie had thoughtfully provided. Our grief made a pot of tear soup.
Sherry celebrated her 64th birthday on the 19th. We gave a resounding affirmative rejoiner to the Beatles' question. "Will you still need me, will you still feed me when I'm sixty-four?"
Friends brought a sprig of lavender and a swag of sage. Their fragrance cut through the antiseptic smell of the hospital, and the next morning our pre-dawn intimacy found exhubrance in our "We have another day!" mantra. We are alive. Life is good. Life is for living.
Sherry told me that she could not retreat into a "Why me?" pool of self pity. Her reply was simply, "Why not?" She refused to remove herself from the shuffle of events that occur in all of our lives at one time or another. Hearing her express this context was both an ilumination and comfort for me. Why not?
Waves of Caring, Waves of Love
As the messages went out a swell of responses began to flow. Caring was, and continues to be, expressed in many different ways. Flowers filled Sherry's hospital room; cards came through the mail; e-mails offered compassionate support; thoughts and prayers were palatable as Sherry felt their warm embrace.
I have decided not to name names for several reasons. First, I would inevitably and inadvertantly forget to include someone. I would feel badly for forgetting, and the person would likely feel that thier efforts were not appreciated. Neither are desirable outcomes. Second, gratitude seems more personal than mention on a blog. Sherry is exercising her brain by writing individual responses. It will take her some time to get a handle on this, but the process is theraputic, and the result is more personal. Third, and perhaps most importantly, expressions of caring take many forms, some of which are not known to us, or even to the persons who created them. For example, Sherry could say to me, "Remember that great dinner we had at Riverdance Lodge and then putting up the rainfly on our new tent at 3:00 am while being pelted by huge drops of rain driven by a sudden thunderstorm?" Of course I remembered and we reveled in the memory of the event, of the friends with whom we shared the experience, and the friends who made it possible. The uplifting came from a past event.
We are enormously rich. It is only love that keeps us afloat.
As Jes' and David's e-mail stated, significant support came through presence. When he learned of the situation Jes dropped everything and came immediately to our side bringing his expertise, his compassion, and his good cheer. My sister, Cheryll, and David Blair also put all else aside and came to share hearts and we sorted though facts and feelings. Marie Juncker, Sherry's sister, also came to offer strong support, abundant love, and careful attention to detail. The members of the congregation of St. John's Orthodox Church truly gave life to faith as they responded. Father Basil's presence and prayers brought Sherry peace and comfort.
Now I started naming names even though I didn't intend to. I'm stopping that right now before I get stuck...
I have decided not to name names for several reasons. First, I would inevitably and inadvertantly forget to include someone. I would feel badly for forgetting, and the person would likely feel that thier efforts were not appreciated. Neither are desirable outcomes. Second, gratitude seems more personal than mention on a blog. Sherry is exercising her brain by writing individual responses. It will take her some time to get a handle on this, but the process is theraputic, and the result is more personal. Third, and perhaps most importantly, expressions of caring take many forms, some of which are not known to us, or even to the persons who created them. For example, Sherry could say to me, "Remember that great dinner we had at Riverdance Lodge and then putting up the rainfly on our new tent at 3:00 am while being pelted by huge drops of rain driven by a sudden thunderstorm?" Of course I remembered and we reveled in the memory of the event, of the friends with whom we shared the experience, and the friends who made it possible. The uplifting came from a past event.
We are enormously rich. It is only love that keeps us afloat.
As Jes' and David's e-mail stated, significant support came through presence. When he learned of the situation Jes dropped everything and came immediately to our side bringing his expertise, his compassion, and his good cheer. My sister, Cheryll, and David Blair also put all else aside and came to share hearts and we sorted though facts and feelings. Marie Juncker, Sherry's sister, also came to offer strong support, abundant love, and careful attention to detail. The members of the congregation of St. John's Orthodox Church truly gave life to faith as they responded. Father Basil's presence and prayers brought Sherry peace and comfort.
Now I started naming names even though I didn't intend to. I'm stopping that right now before I get stuck...
Wednesday, October 7, 2009
New Messages
David worked to keep some people undated. While there was no way he could know who all who would want to know, we appreciate his thoughtful efforts.
The first update was as follows:
September 17, 2009
Hi again,
Just left the hospital. Sherry is doing OK. She has some loss of motor ability. Could be a result of post op swelling or possibly tumor-related. Nevertheless, she will probably NOT be going home this weekend, but rather to rehab (things are very fluid at this point). Jess, Doug’s son will be flying in from Boston this evening to help Doug---excellent news.
When I spoke with some of you, I said that there was a strong possibility Sherry may have only 2 months to live. That is incorrect. As of the most current info. they are guessing at 2 months to 2 years. Pretty different. BUT, that can all change.
More later…..
Dave Gerber, DVM
Then on September 18th:
Hi all,
I am now in Anchorage and will try to get updates daily, if possible. I saw Sherry this morning and she seemed quite good. She will likely be staying at KMC for the immediate future. She is able to have visitors for short visits, and would welcome that. Flowers can be sent to the hospital.
Both Doug’s and Sherry’s sister are here as is Jess, Doug’s son from Boston who will be a GREAT help. He will stay until Tuesday.
Thanks and keep positive.
Dave Gerber, DVM
Then a message to David Gerber from Jes (our son) sent on September 19th and David forwarded on to his list:
-------- Original Message --------
Hi Dave,
Sherry celebrated her 64th birthday today. Her brother Rich gave her a the remastered Yellow Submarine CD and showed such emotion and caring that it was hard not to be touched by his hard-fought sentiment. My Dad gave her a chickadee birdhouse. He is going to hang it in the cedar tree.
We met with the oncologist around 5pm yesterday. He was a wealth of information and was very patient with everyone's questions. Regardless, I am counseling Sherry to seek a second opinion for treatment options, as well as "inoperable"
options. Just because the neurosurgeon at KMC can't do it doesn't mean that someone else can't. Excising as much of each tumor as possible seems to be the one thing that prolongs life in these cases the most.
I looked at the pathology report yesterday and it confirmed glioblastoma. She has 5 of them in the occipital-parietal lobe areas. All of this, plus her decreased motor function and age add up to a Recursive Partition Analysis score (used to bin patients into risk categories) that does not look overly positive.
However, there are a lot of clinical trials available that target many new pathways based upon what we have learned genetically about cancer tissue and treatment response.
I am trying to help my Dad get his head and heart around this new challenge. It is not easy for him. He can be very hard on himself over nothing. That is hard to see and even harder to convince him he's being an asshole about thinking that he's an asshole. Stubborn!
Tomorrow I will drag him kicking and screaming to Capone's to watch the 'Hawks play the 'niners. He needs to have balance in the upcoming months. Keep him in line Gerber!!!
Hope the fishing today was fantastic,
Jes
Jes then replied to David and the list with this warm hearted response:
Hello all,
I just want to apologize for some of my more colloquial language in the last email. Parts of that message were intended only for Gerber, who, along with myself, can easily relate to my Father on certain levels thanks to the old adage "It takes one to know one." Regardless, I guess the sentiment rings true and finding balance is never an easy thing, but even harder at times like this.
Yesterday was an absolutely wonderful day!
The morning began with Dad, Sherry, Aunt Cheryl and Uncle David and I holding hands while Cheryl said a prayer aloud. It began with the words to Amazing Grace. Truly a sweet, sweet sound.
They left to go back home to Bellingham and a short time later the Physical Therapy physician came in to give Sherry a few motor skills tests and to let her know that she would be moving to the Rehabilitation Center on campus today!
This is fantastic news as it seems like there is a lot of hope, as well as solid data, to support the idea that Sherry will be able to learn how to compensate for the partial-paralysis of the left side. In fact, in watching her get tested yesterday, I noticed a dramatic improvement in her ability to move and coordinate her left hand and foot that I hadn't seen when I first got here on Thursday.
All of this is very important as she will need all her strength, and some she never had before, to begin the journey that is before her. The treatments that I've read about for glioblastoma are long and constant and will require a resolve on her part, and those around her, to make every day a good day. I know this can be done.
After the PT doctor left my Dad, Sherry and I went for a stroll outside. It was the first time that Sherry has got to feel sun on her face in almost a week.
She soaked it in like a thirsty flower and bloomed right there and then. I left the two of them alone to watch the house-sparrows flit in and out of a quant little garden by the hospital. They share such a harmonious sense of the beauty in this world. I am truly blessed to have witnessed all of their hard work and devotion to making this community and this planet a more beautiful place.
Later, Sherry's sister came and gave her a prayer bracelet that was made for her at her church that morning. Sherry has always had this amazing ability to weave together a tapestry of reason and faith, of emotion and logic, and to make it create warmth, but to also make it look and feel like something divine. That balance of the human condition, as well as all of the support and love from this community will make this journey a bearable one. My Dad has started a blog called The Terrible/Wonderful. I'm sure he'll send out an announcement soon, but the title of the blog strikes such a chord with what they have embarked upon. I will leave it to my Father's poetic prose to describe the thoughts and feelings behind that title and hope that you all get a chance to read it.
Much love and hope,
Jes
The first update was as follows:
September 17, 2009
Hi again,
Just left the hospital. Sherry is doing OK. She has some loss of motor ability. Could be a result of post op swelling or possibly tumor-related. Nevertheless, she will probably NOT be going home this weekend, but rather to rehab (things are very fluid at this point). Jess, Doug’s son will be flying in from Boston this evening to help Doug---excellent news.
When I spoke with some of you, I said that there was a strong possibility Sherry may have only 2 months to live. That is incorrect. As of the most current info. they are guessing at 2 months to 2 years. Pretty different. BUT, that can all change.
More later…..
Dave Gerber, DVM
Then on September 18th:
Hi all,
I am now in Anchorage and will try to get updates daily, if possible. I saw Sherry this morning and she seemed quite good. She will likely be staying at KMC for the immediate future. She is able to have visitors for short visits, and would welcome that. Flowers can be sent to the hospital.
Both Doug’s and Sherry’s sister are here as is Jess, Doug’s son from Boston who will be a GREAT help. He will stay until Tuesday.
Thanks and keep positive.
Dave Gerber, DVM
Then a message to David Gerber from Jes (our son) sent on September 19th and David forwarded on to his list:
-------- Original Message --------
Hi Dave,
Sherry celebrated her 64th birthday today. Her brother Rich gave her a the remastered Yellow Submarine CD and showed such emotion and caring that it was hard not to be touched by his hard-fought sentiment. My Dad gave her a chickadee birdhouse. He is going to hang it in the cedar tree.
We met with the oncologist around 5pm yesterday. He was a wealth of information and was very patient with everyone's questions. Regardless, I am counseling Sherry to seek a second opinion for treatment options, as well as "inoperable"
options. Just because the neurosurgeon at KMC can't do it doesn't mean that someone else can't. Excising as much of each tumor as possible seems to be the one thing that prolongs life in these cases the most.
I looked at the pathology report yesterday and it confirmed glioblastoma. She has 5 of them in the occipital-parietal lobe areas. All of this, plus her decreased motor function and age add up to a Recursive Partition Analysis score (used to bin patients into risk categories) that does not look overly positive.
However, there are a lot of clinical trials available that target many new pathways based upon what we have learned genetically about cancer tissue and treatment response.
I am trying to help my Dad get his head and heart around this new challenge. It is not easy for him. He can be very hard on himself over nothing. That is hard to see and even harder to convince him he's being an asshole about thinking that he's an asshole. Stubborn!
Tomorrow I will drag him kicking and screaming to Capone's to watch the 'Hawks play the 'niners. He needs to have balance in the upcoming months. Keep him in line Gerber!!!
Hope the fishing today was fantastic,
Jes
Jes then replied to David and the list with this warm hearted response:
Hello all,
I just want to apologize for some of my more colloquial language in the last email. Parts of that message were intended only for Gerber, who, along with myself, can easily relate to my Father on certain levels thanks to the old adage "It takes one to know one." Regardless, I guess the sentiment rings true and finding balance is never an easy thing, but even harder at times like this.
Yesterday was an absolutely wonderful day!
The morning began with Dad, Sherry, Aunt Cheryl and Uncle David and I holding hands while Cheryl said a prayer aloud. It began with the words to Amazing Grace. Truly a sweet, sweet sound.
They left to go back home to Bellingham and a short time later the Physical Therapy physician came in to give Sherry a few motor skills tests and to let her know that she would be moving to the Rehabilitation Center on campus today!
This is fantastic news as it seems like there is a lot of hope, as well as solid data, to support the idea that Sherry will be able to learn how to compensate for the partial-paralysis of the left side. In fact, in watching her get tested yesterday, I noticed a dramatic improvement in her ability to move and coordinate her left hand and foot that I hadn't seen when I first got here on Thursday.
All of this is very important as she will need all her strength, and some she never had before, to begin the journey that is before her. The treatments that I've read about for glioblastoma are long and constant and will require a resolve on her part, and those around her, to make every day a good day. I know this can be done.
After the PT doctor left my Dad, Sherry and I went for a stroll outside. It was the first time that Sherry has got to feel sun on her face in almost a week.
She soaked it in like a thirsty flower and bloomed right there and then. I left the two of them alone to watch the house-sparrows flit in and out of a quant little garden by the hospital. They share such a harmonious sense of the beauty in this world. I am truly blessed to have witnessed all of their hard work and devotion to making this community and this planet a more beautiful place.
Later, Sherry's sister came and gave her a prayer bracelet that was made for her at her church that morning. Sherry has always had this amazing ability to weave together a tapestry of reason and faith, of emotion and logic, and to make it create warmth, but to also make it look and feel like something divine. That balance of the human condition, as well as all of the support and love from this community will make this journey a bearable one. My Dad has started a blog called The Terrible/Wonderful. I'm sure he'll send out an announcement soon, but the title of the blog strikes such a chord with what they have embarked upon. I will leave it to my Father's poetic prose to describe the thoughts and feelings behind that title and hope that you all get a chance to read it.
Much love and hope,
Jes
ICU
We saw Sherry's gurney roll from the recovery room to ICU. However, the ICU staff needed to have time to get all of the monitors hooked up and Sherry settled. Sherry moved from the recovery room to ICU, again after more time than expected. Time to build anxiety? I just didn't know what to expect.
I also knew that I had knowledge that Sherry did not have. The neurosurgeon counselled us to wait until she asked before divulging any information. It seems that patients are typically ready to receive the information when they ask for it. I worried about my capacity to handle that should Sherry ask. I felt (and feel) that having Sherry's complete trust and confidence in me was essential. Withholding information from her could create a wedge between us at this time of great intensity and mystery.
When I was allowed into Sherry's room I was relieved to find her awake and talking though I can't recall a thing that she said. She was eager to be fed bits of ice. She was dominated by thirst and I was glad that I could do something for her to satisfy this basic need. I was relieved that she didn't ask anything about the results from the biopsy.
I became more and more troubled by the dissonance. I contacted the KMC Chaplin who happened to be a person with whom I had worked for several years on our Coeur d'Alene Earth Day Committee. Her counsel was a comfort. When Sherry did ask, I told her that I had preliminary information and that the final report from the pathologist was not completed, and asked her if she wanted to know what that was. She told me that she did not, and wanted to wait for the final ressults. I was relived. Mostly because the wedge I perceived was gone, and also because I knew I didn't have answers for questions I knew Sherry would raise. She would wait for the neurosugeon to bring her the news. The best was that Sherry appeared to be Sherry.While motor skills on her left side were compromised by the swell in her brain caused by the tumors and by the trama of the surgery, she appeared to be cognitively present and was not experiencing pain.
Interminable beeps, monitors, alarms, lights, activity dreamless half sleep with eyes on the blood pressure monitor. Bleeding in the brain was the greatest danger and low blood pressure minimized that risk.
After 24 hours Sherry moved back to a room on the Ortho-Neuro section of the hospital. Her new room had a widow seat long enough for me to stretch out. I saw sleep in our future.
I also knew that I had knowledge that Sherry did not have. The neurosurgeon counselled us to wait until she asked before divulging any information. It seems that patients are typically ready to receive the information when they ask for it. I worried about my capacity to handle that should Sherry ask. I felt (and feel) that having Sherry's complete trust and confidence in me was essential. Withholding information from her could create a wedge between us at this time of great intensity and mystery.
When I was allowed into Sherry's room I was relieved to find her awake and talking though I can't recall a thing that she said. She was eager to be fed bits of ice. She was dominated by thirst and I was glad that I could do something for her to satisfy this basic need. I was relieved that she didn't ask anything about the results from the biopsy.
I became more and more troubled by the dissonance. I contacted the KMC Chaplin who happened to be a person with whom I had worked for several years on our Coeur d'Alene Earth Day Committee. Her counsel was a comfort. When Sherry did ask, I told her that I had preliminary information and that the final report from the pathologist was not completed, and asked her if she wanted to know what that was. She told me that she did not, and wanted to wait for the final ressults. I was relived. Mostly because the wedge I perceived was gone, and also because I knew I didn't have answers for questions I knew Sherry would raise. She would wait for the neurosugeon to bring her the news. The best was that Sherry appeared to be Sherry.While motor skills on her left side were compromised by the swell in her brain caused by the tumors and by the trama of the surgery, she appeared to be cognitively present and was not experiencing pain.
Interminable beeps, monitors, alarms, lights, activity dreamless half sleep with eyes on the blood pressure monitor. Bleeding in the brain was the greatest danger and low blood pressure minimized that risk.
After 24 hours Sherry moved back to a room on the Ortho-Neuro section of the hospital. Her new room had a widow seat long enough for me to stretch out. I saw sleep in our future.
Post Surgery
Waiting... Imagining... Does the surgery taking longer than they said mean things are good? Things are bad? Friends arrive. Comfort and empathy. Love and connection. Waiting...
I have some very difficult news to pass along to you. On Tuesday, Sherry was admitted to the hospital. On Wednesday, they did MRIs that revealed five lesions in her brain. Yesterday they biopsied and have tentatively diagnosed the condition as Stage 4 Glioblastoma.
This is very serious and does not have a good prognosis. This is same cancer that Senator Kennedy had. Stage four is the most severe.
Sherry is doing OK following the biopsy, is in ICU, and will likely go home sometime this weekend. Doug, of course, is trying to sort through this whole thing, needing to be her advocate, and also needing to protect her. He will be fine……eventually.
What we can do:
1. Sherry is not yet aware of the full extent of the problem, so it should not be discussed with her at this point if you happen to talk with her, unless it is obvious that she has the full information. She needs to hear this from her doc, not from us.
2. Doug prefers that she not have visitors until she gets home.
3. You can send cards to their home, send Doug an email, or leave phone messages. But if you send and email or leave a message, PLEASE be sure to tell Doug that you don’t want a call back or reply right now. He is overwhelmed.
4. If you are the praying type, now would be a good time. If not, your kind and supportive thoughts for these wonderful friends is most appreciated.
5. This is not a secret, so you may forward this to whomever you feel should know. Knowing Doug and Sherry, I imagine the lists could be substantial.
Dave & Suzy Gerber
The neurosugeon opens the conference room door, and beckons us to come in. Mom and I gather our things and bustle through the door. The surgeon is kind in manner and with his directness. We weep. Sobs come deep from the diaphram. The worst of the options on the short list explodes, sending waves and waves of perplexity and grief.
Our dear friend David Gerber sent out this message:
Hello Friends of Doug and Sherry,
I have some very difficult news to pass along to you. On Tuesday, Sherry was admitted to the hospital. On Wednesday, they did MRIs that revealed five lesions in her brain. Yesterday they biopsied and have tentatively diagnosed the condition as Stage 4 Glioblastoma.
This is very serious and does not have a good prognosis. This is same cancer that Senator Kennedy had. Stage four is the most severe.
Sherry is doing OK following the biopsy, is in ICU, and will likely go home sometime this weekend. Doug, of course, is trying to sort through this whole thing, needing to be her advocate, and also needing to protect her. He will be fine……eventually.
What we can do:
1. Sherry is not yet aware of the full extent of the problem, so it should not be discussed with her at this point if you happen to talk with her, unless it is obvious that she has the full information. She needs to hear this from her doc, not from us.
2. Doug prefers that she not have visitors until she gets home.
3. You can send cards to their home, send Doug an email, or leave phone messages. But if you send and email or leave a message, PLEASE be sure to tell Doug that you don’t want a call back or reply right now. He is overwhelmed.
4. If you are the praying type, now would be a good time. If not, your kind and supportive thoughts for these wonderful friends is most appreciated.
5. This is not a secret, so you may forward this to whomever you feel should know. Knowing Doug and Sherry, I imagine the lists could be substantial.
Dave & Suzy Gerber
Surgery
Time warped; at once grindingly slow, and likity quick. We woke before the dawn after intermittant dozing. From about 3:00 to 6:00 am Sherry and I found a slice of cosmic time. I had never felt closer though that feeling perserves. We felt strong affirmation of our commitment to each other, and I gained a deeper understanding of what our marriage is--the "one flesh" clause is compellingly powerful.
The interval between waking, the pre-operation rituals, and the impending 2:00 pm surgery was surreal. Would the same Sherry emerge at the other end of this procedure? How could we normalize brain surgery? What would the results of the biopsy be? Benign, slow growing tumor leaving us to return to the comfortable reality of the near past? Malignant? What would that mean?
I waited for the gurney to carry my beloved through the mysterious double doors. I struggled to keep the thought of the future to rob me of the unfolding now.
The gurney came. Sherry was helped onto it, and Mom (Edith Walcott, Sherry's mother) and I walked behind it to the pre-op area. The extra IVs were skillfully attached, and the initial anesthetic began its work. As Sherry went into the operating room I tried to project the hope in my heart through the portals.
The interval between waking, the pre-operation rituals, and the impending 2:00 pm surgery was surreal. Would the same Sherry emerge at the other end of this procedure? How could we normalize brain surgery? What would the results of the biopsy be? Benign, slow growing tumor leaving us to return to the comfortable reality of the near past? Malignant? What would that mean?
I waited for the gurney to carry my beloved through the mysterious double doors. I struggled to keep the thought of the future to rob me of the unfolding now.
The gurney came. Sherry was helped onto it, and Mom (Edith Walcott, Sherry's mother) and I walked behind it to the pre-op area. The extra IVs were skillfully attached, and the initial anesthetic began its work. As Sherry went into the operating room I tried to project the hope in my heart through the portals.
The Emergency Room and Beyond
Fortunately, it was a slow night at Kootenai Health when we arrived at around 10:00 pm. We were taken back almost immediately. Initial tests ruled out a stroke, and the subsequent CAT scan revealed significant swelling in Sherry's brain. She was admitted at about 2:00 am on Tuesday, September 15th.
At around 10:00 am Sherry had the first of three MRIs. These revealed four tumors and an additional area of swelling, but without a tumor that the MRI could detect. The queston then was "What kind of tumors are these?" According to the neurosurgeon the list was pretty short with about four possibilities. A biopsy was the only way to provide an answer. So, brain surgery was scheduled for 2:00 pm on September 16th for the purpose of obtaining a tissue sample from one of the tumors. The surgeion elected to biopsy the tumor on the sensory lobe. He thought that taking a biopsy from the tumor on the motor lobe posed too much risk for impairment although that tumor, like the one on the sensory lobe, was near the outside of Sherry's brain. The other tumors were too deep inside the brain.
The parameters of our reality had suddenly become constricted, intense, and immediate.
At around 10:00 am Sherry had the first of three MRIs. These revealed four tumors and an additional area of swelling, but without a tumor that the MRI could detect. The queston then was "What kind of tumors are these?" According to the neurosurgeon the list was pretty short with about four possibilities. A biopsy was the only way to provide an answer. So, brain surgery was scheduled for 2:00 pm on September 16th for the purpose of obtaining a tissue sample from one of the tumors. The surgeion elected to biopsy the tumor on the sensory lobe. He thought that taking a biopsy from the tumor on the motor lobe posed too much risk for impairment although that tumor, like the one on the sensory lobe, was near the outside of Sherry's brain. The other tumors were too deep inside the brain.
The parameters of our reality had suddenly become constricted, intense, and immediate.
Home
We were busy after our return from Harriman. I was focused on getting the house painted and working down the list of projects that I had created for myself to complete this summer after my retirement.
The physical labor felt good. I was close to my goal of inverting the time I spent inside while working to time spent outside while retired. I, to the chagrin of my dermatologist, was tan, and to the delight of my family physician was losing weight is a measured, systematic way. We enjoyed wonderful meals together with most of the ingredients coming from our garden. Green beans marked the liturgy of season follow by blackberries, currants, pears, and fall raspberries. I noticed that Sherry was moving slowly and carefully, but still attributed it to physiology.
Sherry suspected that more was wrong. She made an appointment with our family physician, and she talked with her physical therapist who assured her that the appointment with her doctor was a great idea. She thought that a referral to a neurologist was likely and from the vantage point of September 11th, the appointment on September 18th seemed comfortable. However, by Sunday the 13th, symptoms had become increasingly alarming. Her left side simply wasn't working properly. We went to Immedate Care. Sherry's symptoms seemed to fall in the category of a stroke and we wanted to rule that out and determine if waiting until the appointment with our family doctor on the 18th was prudent. At the time it seemed so.
September 14th was filled with home and garden activity. I pretty much focused on my tasks--I hung a new rain chain, built a feeder for the quail and doves that had begun to frequent our yard, and generally busyed myself at home. I granted myself a burger break late afternoon. While retuning home detouring around the construction on 4th Street I turned left onto Miller Avenue heading west to Government Way to make my way home. That ended up taking a lot longer than I planned. A young distracted driver blew through the stop sign on 2nd Avenue and collided with the front driver side of our Taurus. Because the collusion occurred a a relatively low rate of speed no one was injured. I was the only person in our car, and the driver of the SUV was also alone. Still, the Taurus was totaled, and I called Sherry to come pick me up after the police completed their investigation and report. Sherry arrived and it was shockingly obvious how impaired she was as she struggled to get out of her mother's car and walked haltedly toward me talking with the police officeer on the cormer.
We went home, ate dinner. I cleaned up the kitchen and Sherry readied for bed. While walking from the bathroom to the bedroom she crunched into the left door jam. She reported seeing a row of flashing lights on the left side of her field of vision, and told me that she wanted to go to the emergency room at KMC. We did just that.
The physical labor felt good. I was close to my goal of inverting the time I spent inside while working to time spent outside while retired. I, to the chagrin of my dermatologist, was tan, and to the delight of my family physician was losing weight is a measured, systematic way. We enjoyed wonderful meals together with most of the ingredients coming from our garden. Green beans marked the liturgy of season follow by blackberries, currants, pears, and fall raspberries. I noticed that Sherry was moving slowly and carefully, but still attributed it to physiology.
Sherry suspected that more was wrong. She made an appointment with our family physician, and she talked with her physical therapist who assured her that the appointment with her doctor was a great idea. She thought that a referral to a neurologist was likely and from the vantage point of September 11th, the appointment on September 18th seemed comfortable. However, by Sunday the 13th, symptoms had become increasingly alarming. Her left side simply wasn't working properly. We went to Immedate Care. Sherry's symptoms seemed to fall in the category of a stroke and we wanted to rule that out and determine if waiting until the appointment with our family doctor on the 18th was prudent. At the time it seemed so.
September 14th was filled with home and garden activity. I pretty much focused on my tasks--I hung a new rain chain, built a feeder for the quail and doves that had begun to frequent our yard, and generally busyed myself at home. I granted myself a burger break late afternoon. While retuning home detouring around the construction on 4th Street I turned left onto Miller Avenue heading west to Government Way to make my way home. That ended up taking a lot longer than I planned. A young distracted driver blew through the stop sign on 2nd Avenue and collided with the front driver side of our Taurus. Because the collusion occurred a a relatively low rate of speed no one was injured. I was the only person in our car, and the driver of the SUV was also alone. Still, the Taurus was totaled, and I called Sherry to come pick me up after the police completed their investigation and report. Sherry arrived and it was shockingly obvious how impaired she was as she struggled to get out of her mother's car and walked haltedly toward me talking with the police officeer on the cormer.
We went home, ate dinner. I cleaned up the kitchen and Sherry readied for bed. While walking from the bathroom to the bedroom she crunched into the left door jam. She reported seeing a row of flashing lights on the left side of her field of vision, and told me that she wanted to go to the emergency room at KMC. We did just that.
Sunday, October 4, 2009
Beginnings: What's Going On?
Mid August found Sherry taking two hour walks at the Railroad Ranch visiting her favorite places seeking familiarity in a new season in this wonder of places. She found the trumpeter swans on Golden Lake, and the sandhill cranes in the meadow beyond the bridge. No moose were to be seen this trip, but a cow elk stepped up to fill the ungulate dance card. She rode her bicycle from the Ranch to Golden Lake, east to the fenceline, then back along the Henry's Fork from Bonefish Flats to the Ranch Manager's house where we were staying. All the while she noticed that her gait was off. Her pace was slow, and she did not go on walks with others, other than one with me on our anniversary. I suspect it was because she didn't want to make them wait.
I dismissed all of this as a symptom of a knee injury Sherry suffered while we repaired out raspberry supports that the heavy winter snow had broken down, and for which Sherry was receiving physical therapy.
After returning home from Harriman State Park I noticed some cognitive dissonance, too. Cupboard doors and drawers were left open. Sherry's impeccible capacity to be organized was seeming to slip. She was spending less and less time working in the garden. I didn't know what to make of this and interpreted it as willful, though that still didn't make sense.
I dismissed all of this as a symptom of a knee injury Sherry suffered while we repaired out raspberry supports that the heavy winter snow had broken down, and for which Sherry was receiving physical therapy.
After returning home from Harriman State Park I noticed some cognitive dissonance, too. Cupboard doors and drawers were left open. Sherry's impeccible capacity to be organized was seeming to slip. She was spending less and less time working in the garden. I didn't know what to make of this and interpreted it as willful, though that still didn't make sense.
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