The Florida Memorial Service will be held Oct. 5, 2009, Monday, 11 a.m. at St. Paul's United Methodist Church in Largo on the corner of Highland and Rosary. The service will be in the Chapel next to the sanctuary. That's the southwest corner of the intersection. Parking is available in the sanctuary lot.
The Louisiana Service will be in Golden Meadow on Saturday, Sept. 26 at Our Lady of Prompt Succor Catholic Church: Visitation at 10 a.m., service at 11 a.m.
We finalized plans for the Florida service just this Friday evening. Sybil has been organizing the Golden Meadow one. Thank you Sybil.
Saturday, September 19, 2009
Monday, September 14, 2009
September 13, 2009, 9:00 pm
Janette Marie Plaisance Delph died last night around 9 p.m in a very gentle and peaceful way. As far as we could tell, she was comfortable and in no pain. She was unresponsive since I last wrote.
I think I will add more details and story to this entry later today or tomorrow.
We will have two services: one here in Florida and one in Louisiana. I have no idea on the timing or how I'm going to create a service here, but I will let you know through this blog and the newspaper as soon as I do.
Thank you very much, everyone, for your support and understanding through this very intense, condensed process. Being willing to get your information about your friend and family member through this impersonal medium was and is a huge gift for me. Thank you.
And a bit of an awkward request: while we thank you for your thoughts and your desire to give comfort to us, please don't send flowers to the house. Aunt Eliska is allergic to many of them and I always forget to give them water.
I think I will add more details and story to this entry later today or tomorrow.
We will have two services: one here in Florida and one in Louisiana. I have no idea on the timing or how I'm going to create a service here, but I will let you know through this blog and the newspaper as soon as I do.
Thank you very much, everyone, for your support and understanding through this very intense, condensed process. Being willing to get your information about your friend and family member through this impersonal medium was and is a huge gift for me. Thank you.
And a bit of an awkward request: while we thank you for your thoughts and your desire to give comfort to us, please don't send flowers to the house. Aunt Eliska is allergic to many of them and I always forget to give them water.
Tuesday, September 8, 2009
Imminently Dying
I've lost track of time but I think it was 36 hours ago, Janette's blood pressure spiked and nothing would bring it down. We thought she would have a stroke, an embolism, a heart attack or simply die. She did none of the above. After three hours, she rolled on her side and went back to sleep. Her blood pressure returned to a tolerable high, 180/88 by the next morning, but she did not return to her old self. She focused on this world only when we or her body intruded on her.
Yesterday evening, she had an hour and a half long series of tremors, mini seizures. She was given medication, but I think they only went away on their own. She's had a couple more episodes of small seizures since then. Each hour she is less responsive to outside stimulus. The first night, every family member in town came over and stayed by her bedside on and off all night. I went to sleep when Janette went to sleep to be rested for the next day. Last night, everyone slept someplace in the house in preparation for her leaving us then.
Uncle Dud, Aunt Missy and Clark drove in Saturday night. Janette had been slowing declining from lack of food and drink and cancer, but still much as she had been when I last wrote. Charles Eric also flew in that night. William came over at 3am for the blood pressure crisis. Wendy and Aunt Eliska have been here all along.
First crisis night, she made two jokes in response to us all standing around her bed smiling at her. Yesterday morning, she opened her eyes and looked at me sitting by her bed. I said, "hi," and she gave me a "hi" back. Her eyes drifted closed and she went back to sleep. Around 3:30 yesterday afternoon, she tried to work with the nurse giving her a sponge bath and changing her pajamas. Those are the last interactions with her reaching out to make contact with us that I know about. Now she reacts to us, but it seems more from the place where she rather be left alone.
We were keeping one or two of us (and the nurse) in the room with her all the time. Last night, we had the sense we were crowding her, so we left her in peace (with the nurse) all night. Today, she had no reaction when the nurse, nurse supervisor and I were whispering together in her room for a half hour. So, we'll probably spend more time with her today. We are all very aware of how much she likes to be left alone when she's not feeling well. Now there's the extra irritation potential of pulling her back into this world when she's trying to learn how to be in the next.
We have been thinking for 36 hours that she could go at anytime. Annie, nurse supervisor, volunteered her guess of 48-72 hours, highly qualified with everyone is different and we can't truly predict.
Janette seems comfortable from all perspectives. She was never in pain, except for a headache with the blood pressure spike and that went away with the morphine. She does not act as if she's in pain now. And the Hospice nurses' main focus is keep her comfortable and pain free.
She didn't really want visitors before, except she asked when her siblings were coming, and we won't be allowing any visits, now. You can talk with her from inside yourself from wherever you're at. I'm sure some part of her will hear you and may even answer. Say your good-bye's and last words in this way, maybe it will help her in moving on.
My focus has been with my mother these last five days. Moving out of it to write this blog and interact with you is not easy for me. I will not post again until she dies. I will try to call some folks and ask some to call other folks but I will pass that message on to many of you by posting here. Here I am abdicating this one social responsibility: I will not be calling all Janette's closer friends to tell you she is gone. It will be time for me to stop being the caretaker, advocate, organizer and communicator and finally be just a grieving daughter.
Yesterday evening, she had an hour and a half long series of tremors, mini seizures. She was given medication, but I think they only went away on their own. She's had a couple more episodes of small seizures since then. Each hour she is less responsive to outside stimulus. The first night, every family member in town came over and stayed by her bedside on and off all night. I went to sleep when Janette went to sleep to be rested for the next day. Last night, everyone slept someplace in the house in preparation for her leaving us then.
Uncle Dud, Aunt Missy and Clark drove in Saturday night. Janette had been slowing declining from lack of food and drink and cancer, but still much as she had been when I last wrote. Charles Eric also flew in that night. William came over at 3am for the blood pressure crisis. Wendy and Aunt Eliska have been here all along.
First crisis night, she made two jokes in response to us all standing around her bed smiling at her. Yesterday morning, she opened her eyes and looked at me sitting by her bed. I said, "hi," and she gave me a "hi" back. Her eyes drifted closed and she went back to sleep. Around 3:30 yesterday afternoon, she tried to work with the nurse giving her a sponge bath and changing her pajamas. Those are the last interactions with her reaching out to make contact with us that I know about. Now she reacts to us, but it seems more from the place where she rather be left alone.
We were keeping one or two of us (and the nurse) in the room with her all the time. Last night, we had the sense we were crowding her, so we left her in peace (with the nurse) all night. Today, she had no reaction when the nurse, nurse supervisor and I were whispering together in her room for a half hour. So, we'll probably spend more time with her today. We are all very aware of how much she likes to be left alone when she's not feeling well. Now there's the extra irritation potential of pulling her back into this world when she's trying to learn how to be in the next.
We have been thinking for 36 hours that she could go at anytime. Annie, nurse supervisor, volunteered her guess of 48-72 hours, highly qualified with everyone is different and we can't truly predict.
Janette seems comfortable from all perspectives. She was never in pain, except for a headache with the blood pressure spike and that went away with the morphine. She does not act as if she's in pain now. And the Hospice nurses' main focus is keep her comfortable and pain free.
She didn't really want visitors before, except she asked when her siblings were coming, and we won't be allowing any visits, now. You can talk with her from inside yourself from wherever you're at. I'm sure some part of her will hear you and may even answer. Say your good-bye's and last words in this way, maybe it will help her in moving on.
My focus has been with my mother these last five days. Moving out of it to write this blog and interact with you is not easy for me. I will not post again until she dies. I will try to call some folks and ask some to call other folks but I will pass that message on to many of you by posting here. Here I am abdicating this one social responsibility: I will not be calling all Janette's closer friends to tell you she is gone. It will be time for me to stop being the caretaker, advocate, organizer and communicator and finally be just a grieving daughter.
Wednesday, September 2, 2009
Now with 24 Hour Nursing Care
Hospice has now found nurses to fill all 3 shifts for us, 8-4, 4-midnight, midnight-8. Annie, our nurse supervisor, was here this morning. She has no plans to take us off continuous care again. All nurses are helping Janette be as comfortable and maintain as much dignity and autonomy as possible.
Janette was moving better after I last wrote and seemed more alert. She's still alert, still shuffling her feet well enough, but is more tired today. Sleepy, she says about herself.
She hasn't had much food for 3 weeks now and there's only so long her body can maintain itself on minimal fluids. Her condition is holding stable with those little rolls of up and down. Hospice does not classify her as "imminently dying." Annie tells me when she gets there, it will be obvious. Then, how much time she takes is unpredictable, 2 days, 30 minutes, it's completely her own timing.
Janette has no pain and no discomfort. She seems to have no needs, emotional or otherwise. Well, except for autonomy. As weak as she is now, she still insisted on cleaning own face and teeth this morning. She also told Wendy to sit up straight when she joined us at breakfast. Otherwise, she doesn't seem to need or want to interact with us or the world. It's all part of the normal dying process, and even that normal is different for each person.
Today, Sept 2, is my father's birthday. He would be 83 today.
Janette was moving better after I last wrote and seemed more alert. She's still alert, still shuffling her feet well enough, but is more tired today. Sleepy, she says about herself.
She hasn't had much food for 3 weeks now and there's only so long her body can maintain itself on minimal fluids. Her condition is holding stable with those little rolls of up and down. Hospice does not classify her as "imminently dying." Annie tells me when she gets there, it will be obvious. Then, how much time she takes is unpredictable, 2 days, 30 minutes, it's completely her own timing.
Janette has no pain and no discomfort. She seems to have no needs, emotional or otherwise. Well, except for autonomy. As weak as she is now, she still insisted on cleaning own face and teeth this morning. She also told Wendy to sit up straight when she joined us at breakfast. Otherwise, she doesn't seem to need or want to interact with us or the world. It's all part of the normal dying process, and even that normal is different for each person.
Today, Sept 2, is my father's birthday. He would be 83 today.
Monday, August 31, 2009
Changes as of Last Thursday
When Janette saw that she was not recovering her strength as fast as she wanted and that she was stymied from doing what she wanted whenever she wanted, she decided she was finished with trying. Janette, Aunt Jackie, our Hospice nurse supervisor and I had a long conversation that afternoon. Janette made it very clear that she does not want to try anymore. The day before she had refused all food and drink except what was necessary to take her medication for blood pressure and seizure prevention.
She is actively trying to bring her death closer and it is working.
Our family left Friday morning. We lost our continuous care coverage the same time. A nurse comes in from midnight to 8 am, so I can sleep, but other than that, it's just me. I'm the only one left with the strength to lift her out of bed and into the wheelchair and then on to whatever surface we're heading for.
Janette now has more side effects from the cancer and from not eating. She can no longer lift herself with her legs. The last 24 hours she almost is not able to shuffle her feet to pivot her body around while I'm supporting her weight. Her blood pressure is continuously high. The last 24 hours, her face turns grey when she doesn't use oxygen. Of course, she doesn't like using oxygen. She doesn't like being helped. She doesn't like being told she has to wait for me to come, but the last 24 hours she hasn't been fighting me as much or is as frustrated with me. I'm sure she doesn't have the energy anymore. And maybe she's coming to some inner peace
Most of the time since I last wrote, she's been in bed. The last two days, she's spent time on the sofa in the family room, propped up on pillows. The night nurse reports her sleep has not been so good.
And Hospice just called. Where back on continuous care. Janette's condition has deteriorated too rapidly for me to continue to do the 16 hours on my own. Hospice seems to have a shortage of nurses right now, so coverage will be a bit sporadic. But a nurse is on her way and will be here at 5 pm.
She is actively trying to bring her death closer and it is working.
Our family left Friday morning. We lost our continuous care coverage the same time. A nurse comes in from midnight to 8 am, so I can sleep, but other than that, it's just me. I'm the only one left with the strength to lift her out of bed and into the wheelchair and then on to whatever surface we're heading for.
Janette now has more side effects from the cancer and from not eating. She can no longer lift herself with her legs. The last 24 hours she almost is not able to shuffle her feet to pivot her body around while I'm supporting her weight. Her blood pressure is continuously high. The last 24 hours, her face turns grey when she doesn't use oxygen. Of course, she doesn't like using oxygen. She doesn't like being helped. She doesn't like being told she has to wait for me to come, but the last 24 hours she hasn't been fighting me as much or is as frustrated with me. I'm sure she doesn't have the energy anymore. And maybe she's coming to some inner peace
Most of the time since I last wrote, she's been in bed. The last two days, she's spent time on the sofa in the family room, propped up on pillows. The night nurse reports her sleep has not been so good.
And Hospice just called. Where back on continuous care. Janette's condition has deteriorated too rapidly for me to continue to do the 16 hours on my own. Hospice seems to have a shortage of nurses right now, so coverage will be a bit sporadic. But a nurse is on her way and will be here at 5 pm.
Tuesday, August 25, 2009
Still Better
Janette walked some this evening while I was out and her sisters were in. She walked to the bathroom with two people supporting her and the same to her bedroom much later. She stayed awake for a long time today. When I came home from dinner with Lee, she was sitting on the couch watching a movie with everyone.
Janette's blood pressure is currently staying 150/70 or below. Her cardiologist almost doubled her beta blocker dosage. We wish the readings were even lower, back to where they use to be, but we're happy they are, currently, not jumping to 209/103.
"Currently" is still an important word. We may be on a steady climb to better health or we may be on an up-down ride. The ups seem to be better and longer than the downs, especially today. Our Hospice nurse still thinks we need continuous care, so we have 24 hour nursing coverage. That's a huge break for me and I think for Janette, too. I can't imagine how I would have continued non-stop to monitor her health and blood pressure and everything she couldn't do for herself after the focused intensity of taking care of so much at the hospital. The thought of it makes my stomach hurt. Thank you Hospice!
My 3 hour "dinner" tonight with Lee was a wonderful break. Each day, I'm more removed from the intensity of the crisis. My Aunts and Uncle, cousins and sister did so much! Even with all their work, my days were still full with the logistics of having Janette back home and the mini health crises she kept having. How do people do this own their own? Thanks everyone! I know it's not only for me, but for your sister, too.
Janette's blood pressure is currently staying 150/70 or below. Her cardiologist almost doubled her beta blocker dosage. We wish the readings were even lower, back to where they use to be, but we're happy they are, currently, not jumping to 209/103.
"Currently" is still an important word. We may be on a steady climb to better health or we may be on an up-down ride. The ups seem to be better and longer than the downs, especially today. Our Hospice nurse still thinks we need continuous care, so we have 24 hour nursing coverage. That's a huge break for me and I think for Janette, too. I can't imagine how I would have continued non-stop to monitor her health and blood pressure and everything she couldn't do for herself after the focused intensity of taking care of so much at the hospital. The thought of it makes my stomach hurt. Thank you Hospice!
My 3 hour "dinner" tonight with Lee was a wonderful break. Each day, I'm more removed from the intensity of the crisis. My Aunts and Uncle, cousins and sister did so much! Even with all their work, my days were still full with the logistics of having Janette back home and the mini health crises she kept having. How do people do this own their own? Thanks everyone! I know it's not only for me, but for your sister, too.
Sunday, August 23, 2009
Going Well, Getting Stronger
Things are going well. Janette continues to gain strength. Last night she slept all the way through with very little coughing. We could see the difference in her face this morning. She insists on doing more and more by herself and is highly motivated to get out of that wheelchair and do everything on her own. Well, I'm sure she's still willing to let me shop and clean.
Her swallowing also improves. She deeply longs just to drink some water. Oh, right: her ability to swallow worsened in the hospital. Why? I don't know. We certainly have enough possible reasons to choose from. So, Janette needed and needs all her food pureed and all her liquids thickened to the consistency of honey. All she wants right now is a drink of plain, unthickened water. This evening we tried 4oz of orange juice half as thick as usual. I made her promise to concentrate intently on swallowing, keep her chin down the whole time, sip slowly, don't try to talk, and so on. She obeyed all the rules and didn't choke or cough once. Two hours later she successfully did it all again.
If she would eat and drink this way all the time, we would rarely have problems and she would get a lot more liquids inside her. But anyone who knows my mother well or knows other members of her family knows this is genetically impossible--the slow, careful, not talking or doing other things at the same time part.
Janette seems to be deeply committed to recovering from her seizures and ventilator traumas. She has not given up, though she realizes the cancer is "worse" than she thought. I don't talk with her about her emotional state right now and she is surrounded by her siblings when she is not sleeping.
She still tires easily, though less so, and is still sleeping much. I think all the sleeping is good. I think we were both very sleep deprived from 5 (6? I lost track) days in the hospital. How can anyone heal in that environment? Not die, yes. Recover, yes. But heal? I don't know. All our hospital nurses and techs were wonderful. It's just so noisy in there with so many interruptions!
We still have consistent care from hospice. If she keeps getting better, I'm sure that will change. I also have all my Aunts and Uncle and my sister helping me right now, wanting to do all the cooking and cleaning up after themselves and insisting that I rest and recover. I'm still tired, but much better. I feel the mental, physical and emotional load lifted somewhat from my shoulders. Thank you, everyone! Aunt Eliska was also carrying this weight with me. I wonder if she is feeling eased or if she is still shouldering as much as she was before. She seems to be doing more physical work. I'm staying home with Janette and she's running everyone around town and back and forth to the airport.
I also really like having all of them here, all together, minus Uncle Terry and, of course, Aunt Sis and Uncle Carroll. I don't get to be with them as often as you all do over there. This is a wonderful treat for me.
And I know that many friends of Janette are reading this, too. We've had a couple of neighbors stop by for a few minutes. She's so often sleeping or tired from talking with her siblings that more than half the time, we turn people away at the door. She not quite ready for visitors. Let's let her spend her strength healing and recovering. Visits beyond 2 minutes seem to wipe her out. With her family, she can just tune them out or listen to them talk among themselves. When friends stop by, she will put all her energy and focus on visiting with you.
Her swallowing also improves. She deeply longs just to drink some water. Oh, right: her ability to swallow worsened in the hospital. Why? I don't know. We certainly have enough possible reasons to choose from. So, Janette needed and needs all her food pureed and all her liquids thickened to the consistency of honey. All she wants right now is a drink of plain, unthickened water. This evening we tried 4oz of orange juice half as thick as usual. I made her promise to concentrate intently on swallowing, keep her chin down the whole time, sip slowly, don't try to talk, and so on. She obeyed all the rules and didn't choke or cough once. Two hours later she successfully did it all again.
If she would eat and drink this way all the time, we would rarely have problems and she would get a lot more liquids inside her. But anyone who knows my mother well or knows other members of her family knows this is genetically impossible--the slow, careful, not talking or doing other things at the same time part.
Janette seems to be deeply committed to recovering from her seizures and ventilator traumas. She has not given up, though she realizes the cancer is "worse" than she thought. I don't talk with her about her emotional state right now and she is surrounded by her siblings when she is not sleeping.
She still tires easily, though less so, and is still sleeping much. I think all the sleeping is good. I think we were both very sleep deprived from 5 (6? I lost track) days in the hospital. How can anyone heal in that environment? Not die, yes. Recover, yes. But heal? I don't know. All our hospital nurses and techs were wonderful. It's just so noisy in there with so many interruptions!
We still have consistent care from hospice. If she keeps getting better, I'm sure that will change. I also have all my Aunts and Uncle and my sister helping me right now, wanting to do all the cooking and cleaning up after themselves and insisting that I rest and recover. I'm still tired, but much better. I feel the mental, physical and emotional load lifted somewhat from my shoulders. Thank you, everyone! Aunt Eliska was also carrying this weight with me. I wonder if she is feeling eased or if she is still shouldering as much as she was before. She seems to be doing more physical work. I'm staying home with Janette and she's running everyone around town and back and forth to the airport.
I also really like having all of them here, all together, minus Uncle Terry and, of course, Aunt Sis and Uncle Carroll. I don't get to be with them as often as you all do over there. This is a wonderful treat for me.
And I know that many friends of Janette are reading this, too. We've had a couple of neighbors stop by for a few minutes. She's so often sleeping or tired from talking with her siblings that more than half the time, we turn people away at the door. She not quite ready for visitors. Let's let her spend her strength healing and recovering. Visits beyond 2 minutes seem to wipe her out. With her family, she can just tune them out or listen to them talk among themselves. When friends stop by, she will put all her energy and focus on visiting with you.
Saturday, August 22, 2009
We're All Home!
As William said in his last post (thank you, William,) I am exhausted. Please don't call me for updates because I am still very stressed. I will let you know when you can visit. And this entry will be brief.
Janette is home now. Every 6 hours that passes in this 5 day journey, she is obviously stronger. We don't know how strong she will become, but she is committed to getting there, however far it is. We are using hospice services, which gives us continuous care, (wonderful nurses, so far!) "hospital" bed, comfort meds, supplies, advice, advocacy, etc., etc.
The first thing Janette wanted to do was get out of bed and into the wheelchair and come out to the family room to sit with us. I had to convince her to wait the two minutes for the nurse. Next she wanted all the tags and hospital bandages off...you see where this is going.
She tires easily and, again, is much stronger. After a hour with us this morning and washing up and all that, she was ready for a nap.
We don't have a prognosis on cancer or recovery from her hospital journey, but the nurses do not see her as--there's a jargon phrase I'm not remembering--maybe "imminently dying." She will die from all this, but it's not now, unless she goes suddenly.
Aunt Judy and Aunt Jackie are coming in this evening--that makes all her living siblings visiting with her now.
And our hearts are with Aunt Judy, our cousins and the rest of our family for the loss of their husband, father and our Uncle. We are all so sorry for your loss. It's our loss, too. And we still feel the loss of Aunt Sis and our thoughts are also with our cousins in Houma. I am also so sorry for your loss. Mom wants to wait a while and not make us go through all that again.
Janette is home now. Every 6 hours that passes in this 5 day journey, she is obviously stronger. We don't know how strong she will become, but she is committed to getting there, however far it is. We are using hospice services, which gives us continuous care, (wonderful nurses, so far!) "hospital" bed, comfort meds, supplies, advice, advocacy, etc., etc.
The first thing Janette wanted to do was get out of bed and into the wheelchair and come out to the family room to sit with us. I had to convince her to wait the two minutes for the nurse. Next she wanted all the tags and hospital bandages off...you see where this is going.
She tires easily and, again, is much stronger. After a hour with us this morning and washing up and all that, she was ready for a nap.
We don't have a prognosis on cancer or recovery from her hospital journey, but the nurses do not see her as--there's a jargon phrase I'm not remembering--maybe "imminently dying." She will die from all this, but it's not now, unless she goes suddenly.
Aunt Judy and Aunt Jackie are coming in this evening--that makes all her living siblings visiting with her now.
And our hearts are with Aunt Judy, our cousins and the rest of our family for the loss of their husband, father and our Uncle. We are all so sorry for your loss. It's our loss, too. And we still feel the loss of Aunt Sis and our thoughts are also with our cousins in Houma. I am also so sorry for your loss. Mom wants to wait a while and not make us go through all that again.
Wednesday, August 19, 2009
Hospital Day 3 and 4 and 5
Hello, this is William doing this entry for Aunt Janette and Cathy.
On Monday, her daughter, Wendy, flew in to be with her. Also her brother, sister-in-law and nephew arrived by car from Louisiana. So Wendy, Uncle Dud, Aunt Missy and Clark are all here with her. It is always good to have family around in times like these.
Yesterday, Aunt Janette was removed from the ventilator to see how she would do breathing on her own. She had quite a bit of difficulty breathing but managed to continue on. As the day progressed, she was able to sleep and her breathing while still quite labored was not as intense a struggle for breath. Later in the afternoon, she began to wake up and be a bit more alert. She asked where she was, how long was she here and such. She also made it clear she needed to take her medication, like her beta-blocker, so her mind is good as far as longer term memory. Her nurse, Jason, was helpful and attentive to her needs by working to keep her airway clear as fluid built up. Outside of the pain in her throat from the ventilator tube, she was not in much pain.
So far today things are the same. She has been moved to a private room from the CCU room. She has labored breathing and is struggling to keep her airway clear of the fluid buildup. A nurse showed Clark how to suction out her airway to help her breathe. Please keep her in your prayers.
As for contacting Cathy to get a status, please keep in mind that she is spending most of her time at the hospital and getting a phone call in the room has the potential of waking Aunt Janette if she is sleeping. Plus getting so many calls and having to keep explaining the same thing can become weary on Cathy. Eliska tries to keep everyone updated as best she can so it is better to contact her instead of Cathy. This does not mean do not contact but just be mindful of what is occurring, so if you can call someone else to get a status please try that.
Thank you for your understanding and concern!
We all love Aunt Janette!!!
Sunday, August 16, 2009
Hospital Day 2
The MRI showed nothing in her brain. The brain is free of any lesions. Janette does not have cancer in her brain. The neurologist speculated that she could have a form of cancer in her brain fluid or spinal fluid. The oncologist on-call from our cancer center had no theory and no cancer prognosis. She, the oncologist, didn't have much to say to us at all. She was nice, but insubstantial feeling. It's Sunday; tomorrow our normal oncologist may be back in circulation.
But really, the only way to get more data is to do more invasive testing, like a spinal tap. We're not going to do that. I doubt Janette wants any more cancer treatment, anyway, unless is palliative for pain management.
She's in no pain right now. This evening she had a milder headache.
Yes, she is alert now, as alert as anyone is after a major health ordeal. She is on a ventilator and only mildly sedated. I think what they give her is not really a sedative, but something relaxing so she won't choke on and fight the ventilator tube. Gagging on it without help is a good sign. So is taking breaths on her own, which she does occasionally. She's aware when she's not sleeping. She spent a couple of hours on and off trying to mouth something to me. She knew I wasn't understanding her and knew enough to continue to exaggerate her lip movements until finally I saw "go home."
"You want me to go home?"
She shakes her head no and tries to point at herself.
"You want to go home?"
Yes, she nods her head.
"You can't go home yet. You're on a ventilator because you had trouble breathing during your seizure crisis. Once on a ventilator, the body stops trying to breath on its own. You need one to two days to be weaned off of it and then you can go home. You have to learn to breathe on your own first."
She relaxes, nods her head to shows she understands, closes her eyes and allows herself to go back into a doze.
We can't usually read her lips. Mostly she obviously wants to tell us something and then nods or shakes her head to questions. This must be very frustrating to her because we have to guess from infinite possibilities. She's told me she's not uncomfortable and not in pain. She spent a long time on and off trying to tell us the ventilator tube hurt her lip. They moved it to the other side right before we figured that out.
She's receiving wonderful care from the CCU nurse who's been on during the day this weekend. They work 12 hour days, 3 days a week. Tuesday, a new nurse will be on duty. A respiratory technician comes by regularly to take readings and check on her and the ventilator. We've also been pleased with their care.
Tomorrow they will begin weaning Janette off the ventilator. This is important. She needs to get off the ventilator soon. So, if you want to pray for something, you can pray for if it's in her best interest, Janette is able to breathe completely on her own.
Janette is on medication for seizures. She will need to stay on that medication after the hospital.
I think that's everything. Oh, if you're thinking about flowers, she can't have flowers or plants in the CCU rooms.
But really, the only way to get more data is to do more invasive testing, like a spinal tap. We're not going to do that. I doubt Janette wants any more cancer treatment, anyway, unless is palliative for pain management.
She's in no pain right now. This evening she had a milder headache.
Yes, she is alert now, as alert as anyone is after a major health ordeal. She is on a ventilator and only mildly sedated. I think what they give her is not really a sedative, but something relaxing so she won't choke on and fight the ventilator tube. Gagging on it without help is a good sign. So is taking breaths on her own, which she does occasionally. She's aware when she's not sleeping. She spent a couple of hours on and off trying to mouth something to me. She knew I wasn't understanding her and knew enough to continue to exaggerate her lip movements until finally I saw "go home."
"You want me to go home?"
She shakes her head no and tries to point at herself.
"You want to go home?"
Yes, she nods her head.
"You can't go home yet. You're on a ventilator because you had trouble breathing during your seizure crisis. Once on a ventilator, the body stops trying to breath on its own. You need one to two days to be weaned off of it and then you can go home. You have to learn to breathe on your own first."
She relaxes, nods her head to shows she understands, closes her eyes and allows herself to go back into a doze.
We can't usually read her lips. Mostly she obviously wants to tell us something and then nods or shakes her head to questions. This must be very frustrating to her because we have to guess from infinite possibilities. She's told me she's not uncomfortable and not in pain. She spent a long time on and off trying to tell us the ventilator tube hurt her lip. They moved it to the other side right before we figured that out.
She's receiving wonderful care from the CCU nurse who's been on during the day this weekend. They work 12 hour days, 3 days a week. Tuesday, a new nurse will be on duty. A respiratory technician comes by regularly to take readings and check on her and the ventilator. We've also been pleased with their care.
Tomorrow they will begin weaning Janette off the ventilator. This is important. She needs to get off the ventilator soon. So, if you want to pray for something, you can pray for if it's in her best interest, Janette is able to breathe completely on her own.
Janette is on medication for seizures. She will need to stay on that medication after the hospital.
I think that's everything. Oh, if you're thinking about flowers, she can't have flowers or plants in the CCU rooms.
Saturday, August 15, 2009
A Rapid Turn for the Worse
Last night at midnight, Janette woke me up to say she had a horrible headache. Soon after we were sitting together, she had a seizure. We took her by ambulance to Mease Dunedin Hospital, (727) 734-6228. Her potential condition was routed to Dunedin rather than Morton Plant, the closer hospital. She had one more seizure with the paramedics present, another in the ambulance and another much later in the ER.
We spent the rest of the night in the ER trying to get the seizures and her blood pressure under control and stable. A CT scan showed no signs of hemorrhage or stroke in the brain, the seizures were not due to a spike in her blood pressure and not due to a reaction to the new chemo. She is scheduled for an MRI this afternoon to be sure, but the theory is the cancer had also metastasized to the brain. We will have more information this afternoon when all the doctors have a chance to look at her and her test results.
Janette had difficulty breathing on her own during the crisis times. She is on a ventilator for now and heavily sedated. Ventilator = heavy sedation. In the ER, she had many "aftershocks," little, mild seizures. Once she was admitted to the critical care unit (rm 16) at 8am and settled in she seemed much more comfortable and relaxed and seemed to be resting peacefully. Seizures are exhausting.
Janette has been unresponsive after her first seizure at midnight. Before, she was in physical crisis; now she is sedated. I don't know yet how aware she is. I will know more when we go back to the hospital this afternoon. Aunt Elizka and I came home at 9am to rest and wash up.
I'm sure I'm forgetting something. I haven't slept. Please do my work for me and tell the folks you think need to know. I may not be able to update the blog right away; I have a felling I'm going straight to sleep tonight. But I really will try to keep this current and you informed.
We spent the rest of the night in the ER trying to get the seizures and her blood pressure under control and stable. A CT scan showed no signs of hemorrhage or stroke in the brain, the seizures were not due to a spike in her blood pressure and not due to a reaction to the new chemo. She is scheduled for an MRI this afternoon to be sure, but the theory is the cancer had also metastasized to the brain. We will have more information this afternoon when all the doctors have a chance to look at her and her test results.
Janette had difficulty breathing on her own during the crisis times. She is on a ventilator for now and heavily sedated. Ventilator = heavy sedation. In the ER, she had many "aftershocks," little, mild seizures. Once she was admitted to the critical care unit (rm 16) at 8am and settled in she seemed much more comfortable and relaxed and seemed to be resting peacefully. Seizures are exhausting.
Janette has been unresponsive after her first seizure at midnight. Before, she was in physical crisis; now she is sedated. I don't know yet how aware she is. I will know more when we go back to the hospital this afternoon. Aunt Elizka and I came home at 9am to rest and wash up.
I'm sure I'm forgetting something. I haven't slept. Please do my work for me and tell the folks you think need to know. I may not be able to update the blog right away; I have a felling I'm going straight to sleep tonight. But I really will try to keep this current and you informed.
Friday, August 14, 2009
Communication Doors Are Now Open....we also have test results
Every one's thoughts had an effect: Janette is consistently eating and drinking, remembering and making the effort to do so herself. As Aunt Eliska says, "She's now fighting the cancer instead of us." Janette's weight hovered at 118 lbs for a while and on Wednesday was up to 121. She often looks very good. There's a sparkle in her eyes that wasn't there before. Her attitude about her own healing feels very different to me. Thank you everyone for your help.
You are welcome to call her to say hello and you are welcome to stop by for a visit now, just call for an appointment first. Talking is still tiring for her and of course the treatments take their own energy toll, but she is doing much, much better. Right now in fact, I have a touch of some virus and she is trying to take care of me. She's certainly been doing more housework than I have the last few days.
You didn't hear from me for 3 weeks because Jochen was visiting. We had a few play days all to ourselves, worked very hard at times and spent much time running around. Any free time I had, I took it with Jochen and not working on this blog. I'm sure you all understand.
The other piece of important news is the results from Janette's CT scan on Monday. The good news is all the lymph nodes with cancer are smaller. The treatments worked and may be why she is feeling better with more energy. The not so good news is the cancer has spread to three more spots: a spot on L2 (a vertebrae in the lower spine) and two, 1cm sized tumors on her liver. The oncologist said its time to step up the treatment. Wednesday she began a new, more aggressive chemo protocol with the drug docetaxel or "Taxotere." It has the potential for more side effects or effects felt more strongly in the body. So far, so good, though her blood pressure is higher. We are talking with the cardiologist. Saturday is usually when the nausea starts, so we'll learn more tomorrow.
The normal protocol for docetaxel is 3 weeks on, one week off. The oncologist wants to start with two weeks on, one week off to see how she handles it. Next Wednesday, Aug 19, is her second treatment and the next Wednesday after that we check in with the oncologist.
If the chemo wears her down too much then she wouldn't want to talk with or see people after all. But ask anyway, she and I will tell you the truth.
Much has been happening in our Louisiana family, most of it not easy. Our thoughts are with you all over there. And also for you all, I went with Aunt Eliska to her cardiologist appointment yesterday. She is fine; her heart sounds good. The extra chest pain she has been having could be due to the great amount of extra stress, but is also part of her condition: slowed blood flow through her microscopic arteries. The treatment is medication to improve the flow over time. She should continue to get better. The doctor slightly modified her current dosage and added a new medication for some extra help right now. She's OK. She's doing the right things. Her blood pressure is good. Her heart sounds good.
And other good news, Wendy is coming here on Aug 22 to stay for 2-3 weeks. We look forward to seeing her.
You are welcome to call her to say hello and you are welcome to stop by for a visit now, just call for an appointment first. Talking is still tiring for her and of course the treatments take their own energy toll, but she is doing much, much better. Right now in fact, I have a touch of some virus and she is trying to take care of me. She's certainly been doing more housework than I have the last few days.
You didn't hear from me for 3 weeks because Jochen was visiting. We had a few play days all to ourselves, worked very hard at times and spent much time running around. Any free time I had, I took it with Jochen and not working on this blog. I'm sure you all understand.
The other piece of important news is the results from Janette's CT scan on Monday. The good news is all the lymph nodes with cancer are smaller. The treatments worked and may be why she is feeling better with more energy. The not so good news is the cancer has spread to three more spots: a spot on L2 (a vertebrae in the lower spine) and two, 1cm sized tumors on her liver. The oncologist said its time to step up the treatment. Wednesday she began a new, more aggressive chemo protocol with the drug docetaxel or "Taxotere." It has the potential for more side effects or effects felt more strongly in the body. So far, so good, though her blood pressure is higher. We are talking with the cardiologist. Saturday is usually when the nausea starts, so we'll learn more tomorrow.
The normal protocol for docetaxel is 3 weeks on, one week off. The oncologist wants to start with two weeks on, one week off to see how she handles it. Next Wednesday, Aug 19, is her second treatment and the next Wednesday after that we check in with the oncologist.
If the chemo wears her down too much then she wouldn't want to talk with or see people after all. But ask anyway, she and I will tell you the truth.
Much has been happening in our Louisiana family, most of it not easy. Our thoughts are with you all over there. And also for you all, I went with Aunt Eliska to her cardiologist appointment yesterday. She is fine; her heart sounds good. The extra chest pain she has been having could be due to the great amount of extra stress, but is also part of her condition: slowed blood flow through her microscopic arteries. The treatment is medication to improve the flow over time. She should continue to get better. The doctor slightly modified her current dosage and added a new medication for some extra help right now. She's OK. She's doing the right things. Her blood pressure is good. Her heart sounds good.
And other good news, Wendy is coming here on Aug 22 to stay for 2-3 weeks. We look forward to seeing her.
Friday, July 24, 2009
Busy Week, Less Stress, More Fluids
Yes, after being lectured more strongly by the chemo nurses and right after I published the last blog entry and after all of you read that gave out the collective thought, "Drink!" Janette has flipped her attitude and is now drinking much more. Whew!
I took Janette in for fluids this morning. We weren't sure if she really needed them. She wasn't showing any of the normal symptoms, but I didn't want her to get so dehydrated again. She was fine, so what we did instead was have a long conversation with the nurse. Janette is hydrated well enough for now, not great or perfectly, but well enough to keep taking fluids the way the rest of us do. If she keeps up this level of drinking and increases a bit more, she should stay hydrated enough. Good job! So, instead of another drinking lecture, Janette got a lecture about eating.
OK now everyone, all together, "Janette/Aunt Blackie, Eat!!"
Janette had backed off on her eating when she started drinking more. Her weight today was 119 lbs. Yes, she weighed so little last week, but that was dehydration. Fluids weight a lot! One liter of saline added 2.5 lbs each visit. But this 119 lbs is lack of food. It was a good lecture: Why she needs food and what type of food and how to eat small meals and how often and why food over vitamins and how her weight is much too low. Janette hates hearing this. You can see it in her face when we get to the part where she has to eat a little bit every two hours. Maybe it's the part where we say "have to" and "on this particular schedule." Whatever the block has been, she seems to be trying to get past it.
After this morning's lecture and no fluids, I suggested, as I often do, we get something special to eat. Today she said, yes. We picked up Aunt Eliska from around the corner and went out for breakfast. Janette ate 2"x5" piece of pancake with butter and syrup and about 10oz of orange juice. (I also got Aunt Eliska to eat an egg, protein, with her carbs, grits.) Ultimately, she wants to eat separately from drinking so she can do more of both, but the timing was bad for this morning. Before, she would take two bites and say, "I'm full," with the energy of (in my mind; she would probably disagree), "and I'm not going to eat anymore." Today she really, truly kept trying. And Aunt Eliska just called: Janette woke up from her short nap over there and is willing to try to eat some clam chowder. Gold star for attitude! We've been teasing her with this and she laughs with us.
Why is she over at Aunt Eliska's? First, Eliska made it safely back from Golden Meadow, though she's even more tired now. I'm a little worried about her health, too, but she is trying to rest more and not do too much walking or work right now. She thought the service for Aunt Sis was beautiful and she greatly enjoyed visiting with everyone. She was also very grateful for the opportunity to say good-bye to her sister. Second, we're having all the 43 year old windows replaced for hurricane season! Boy, those old panes popped out so easily! The only ones staying are the two sliding glass doors--they are good, tight fitting safety glass--and the kitchen window because it's an odd size. The new windows arrived to be installed just in time for Sybil's visit tomorrow afternoon. It's a noisy, hot process and they'll be finished sometime today.
I took Janette in for fluids this morning. We weren't sure if she really needed them. She wasn't showing any of the normal symptoms, but I didn't want her to get so dehydrated again. She was fine, so what we did instead was have a long conversation with the nurse. Janette is hydrated well enough for now, not great or perfectly, but well enough to keep taking fluids the way the rest of us do. If she keeps up this level of drinking and increases a bit more, she should stay hydrated enough. Good job! So, instead of another drinking lecture, Janette got a lecture about eating.
OK now everyone, all together, "Janette/Aunt Blackie, Eat!!"
Janette had backed off on her eating when she started drinking more. Her weight today was 119 lbs. Yes, she weighed so little last week, but that was dehydration. Fluids weight a lot! One liter of saline added 2.5 lbs each visit. But this 119 lbs is lack of food. It was a good lecture: Why she needs food and what type of food and how to eat small meals and how often and why food over vitamins and how her weight is much too low. Janette hates hearing this. You can see it in her face when we get to the part where she has to eat a little bit every two hours. Maybe it's the part where we say "have to" and "on this particular schedule." Whatever the block has been, she seems to be trying to get past it.
After this morning's lecture and no fluids, I suggested, as I often do, we get something special to eat. Today she said, yes. We picked up Aunt Eliska from around the corner and went out for breakfast. Janette ate 2"x5" piece of pancake with butter and syrup and about 10oz of orange juice. (I also got Aunt Eliska to eat an egg, protein, with her carbs, grits.) Ultimately, she wants to eat separately from drinking so she can do more of both, but the timing was bad for this morning. Before, she would take two bites and say, "I'm full," with the energy of (in my mind; she would probably disagree), "and I'm not going to eat anymore." Today she really, truly kept trying. And Aunt Eliska just called: Janette woke up from her short nap over there and is willing to try to eat some clam chowder. Gold star for attitude! We've been teasing her with this and she laughs with us.
Why is she over at Aunt Eliska's? First, Eliska made it safely back from Golden Meadow, though she's even more tired now. I'm a little worried about her health, too, but she is trying to rest more and not do too much walking or work right now. She thought the service for Aunt Sis was beautiful and she greatly enjoyed visiting with everyone. She was also very grateful for the opportunity to say good-bye to her sister. Second, we're having all the 43 year old windows replaced for hurricane season! Boy, those old panes popped out so easily! The only ones staying are the two sliding glass doors--they are good, tight fitting safety glass--and the kitchen window because it's an odd size. The new windows arrived to be installed just in time for Sybil's visit tomorrow afternoon. It's a noisy, hot process and they'll be finished sometime today.
Saturday, July 18, 2009
Deaths and Births
We are all very sad. Janette's eldest sister, Elenore "Sis" Theroit died this afternoon with all her family around her. Aunt Eliska flew to Louisiana early today to be with Aunt Sis. Janette is staying in Florida with me.
Two weeks ago, their cousin and foster brother "Dickie" also died. Aunt Sis went into the hospital and critical care soon after. They are the first siblings, out of the 10, to leave them.
Earlier this week, we were happy for Aunt Eliska. Her granddaughter, Rebecca, gave birth to an 8 pound 13 ounce baby boy, Zigmund or "Ziggy." I'm not sure of the baby's last name or if I correctly spelled his first name.
Last night, we also learned that Jill's daughter, Lacie, gave birth prematurely to an almost 2 pound baby boy, Kaden. Mother and baby are doing fine, though we were worried about both when we learned the day before that Lacie had gone into labor.
Also yesterday, Jochen flew in from Oregon to spend 3 weeks with us here. Aunt Eliska and I drove to the airport to bring him home and then at 4:30 this morning, Jochen and I drove Aunt Eliska to the airport to send her to Louisiana.
To make an understatement, the Plaisance-Theriot clan has had a very stressful week.
Stressful Week in Clearwater
Last blog entry, I wrote that Janette was not feeling well after her compounded treatments. The next day she felt even worse--vomiting, running a fever, sleeping most of the time and not able to eat or drink. The oncologist prescribed antibiotics, just to be sure, though the fever may have been from dehydration. Her weight dropped from 126 that Thursday to 119 on Monday. This Monday through Thursday, we went each day for Janette to get a liter of IV fluids and an IV dose of Tagemet, steroids and antinausea meds. They call that a "Happy Meal." By Wednesday, Janette was feeling much better. But still, she is not eating or drinking much and is dehydrating too quickly, too often. Early this morning while I was napping after my airport run, I heard her calling out to me. She was mildly disoriented, gaunt and lightheaded--all signs of dehydration. So, once again we drove to the cancer center for a liter of saline and a small dose of steroids.
I've avoided writing about this because it upsets her so much when we all tell her: Janette is not eating and not drinking anywhere close to enough to be healthy. She's not nauseous; she just doesn't feel like putting anything in her stomach. Cancer does that. Now her stomach has shrunk so much, she feels full after a few bites or sips. I think the lack of nutrients, fuel, electrolytes and water is her biggest health challenge. IV fluids are not the answer. The nurses say she needs fluids in her digestive system. The nurses have explained also that one liter is not enough even for one day. I think Janette is drinking about three cups a day on average and never more than four. And dehydration and maybe chemotherapy also cause her to pass more fluids than what she takes into her body. She is never taking in enough to stay even mildly hydrated and each week has at least one dehydration "crisis."
Two weeks ago, their cousin and foster brother "Dickie" also died. Aunt Sis went into the hospital and critical care soon after. They are the first siblings, out of the 10, to leave them.
Earlier this week, we were happy for Aunt Eliska. Her granddaughter, Rebecca, gave birth to an 8 pound 13 ounce baby boy, Zigmund or "Ziggy." I'm not sure of the baby's last name or if I correctly spelled his first name.
Last night, we also learned that Jill's daughter, Lacie, gave birth prematurely to an almost 2 pound baby boy, Kaden. Mother and baby are doing fine, though we were worried about both when we learned the day before that Lacie had gone into labor.
Also yesterday, Jochen flew in from Oregon to spend 3 weeks with us here. Aunt Eliska and I drove to the airport to bring him home and then at 4:30 this morning, Jochen and I drove Aunt Eliska to the airport to send her to Louisiana.
To make an understatement, the Plaisance-Theriot clan has had a very stressful week.
Stressful Week in Clearwater
Last blog entry, I wrote that Janette was not feeling well after her compounded treatments. The next day she felt even worse--vomiting, running a fever, sleeping most of the time and not able to eat or drink. The oncologist prescribed antibiotics, just to be sure, though the fever may have been from dehydration. Her weight dropped from 126 that Thursday to 119 on Monday. This Monday through Thursday, we went each day for Janette to get a liter of IV fluids and an IV dose of Tagemet, steroids and antinausea meds. They call that a "Happy Meal." By Wednesday, Janette was feeling much better. But still, she is not eating or drinking much and is dehydrating too quickly, too often. Early this morning while I was napping after my airport run, I heard her calling out to me. She was mildly disoriented, gaunt and lightheaded--all signs of dehydration. So, once again we drove to the cancer center for a liter of saline and a small dose of steroids.
I've avoided writing about this because it upsets her so much when we all tell her: Janette is not eating and not drinking anywhere close to enough to be healthy. She's not nauseous; she just doesn't feel like putting anything in her stomach. Cancer does that. Now her stomach has shrunk so much, she feels full after a few bites or sips. I think the lack of nutrients, fuel, electrolytes and water is her biggest health challenge. IV fluids are not the answer. The nurses say she needs fluids in her digestive system. The nurses have explained also that one liter is not enough even for one day. I think Janette is drinking about three cups a day on average and never more than four. And dehydration and maybe chemotherapy also cause her to pass more fluids than what she takes into her body. She is never taking in enough to stay even mildly hydrated and each week has at least one dehydration "crisis."
Saturday, July 11, 2009
All Is Well
Hello again, everyone. Thanks for the break. I know it wasn't one you agreed to, but it was one I needed to step back a bit from crisis mode. Thank you.
Janette has been doing well. Each day she is eating a little better and finding a little more energy. She believes the negative effects of radiation are wearing off. July 4, she went to a friend's house for several hours and ate two slices of pizza.
We were happy to see Aunt Judy, Jill and Casey. Janette still was tired often, but that was when her appetite improved. Aunt Judy brought and cooked some delicious crab patties and made a pot of red beans and a pot of white beans to freeze and eat later. Thank you!
Radiation is over but chemo begins. Janette had her second chemo session Wednesday. These treatments are 21 days apart. The first treatment left her mildly nauseous and a little tired. It also depleted her red and white blood cells just to the edge of the acceptable levels. She had, at different times, a shot to increase white blood cell production and a long lasting one to increase hemoglobin production. You know, I'm not sure I got the wording right on that, but it's the essence of what they want her body to do. Her reactions to both were minimal.
Thursday she had another long lasting shot, this time for white blood cell production. It's a different drug than the first time, stronger and longer lasting. Between this shot and the second chemo treatment, Janette is not feeling well at all. More nausea, no vomiting, and much more fatigue. I wanted to tell everyone she was ready to take your short phone calls and very short visits, but now I'm not sure. Let's see what happens.
The oncologist ordered the second white blood cell shot not because Janette's count was so low but because we thought we may drive to Louisiana. Her eldest sister is in the hospital, very ill. We are waiting to see what happens to decide what we will do. Please include Aunt Sis and her family in your prayers along with Aunt Judy and Uncle Carrol and their family. I don't know if I mentioned this before in my blog: my Uncle Carrol also has lung cancer, a different form, diagnosed around the same time as my mother's. Aunt Judy's visit was a special gift.
And for the family who are reading, Aunt Eliska is now a 20 year cancer survivor! Last month she had several tests, including a PET scan, to look for any traces of cancer growth. Last week we met with Aunt Eliska's new oncologist: not a trace of cancer found! Some good news for this family. She also had an ultrasound for vascular blockage in her neck, none found! And the oncologist (and I) pushed her to get a blood sugar monitor and check her levels every hour for one day. Again, no problems, no sign of pre-diabetes!
And also congratulations to the new babies born and about to be born to our friends and family! Janette was (and is) checking her email each day for the news.
Janette has been doing well. Each day she is eating a little better and finding a little more energy. She believes the negative effects of radiation are wearing off. July 4, she went to a friend's house for several hours and ate two slices of pizza.
We were happy to see Aunt Judy, Jill and Casey. Janette still was tired often, but that was when her appetite improved. Aunt Judy brought and cooked some delicious crab patties and made a pot of red beans and a pot of white beans to freeze and eat later. Thank you!
Radiation is over but chemo begins. Janette had her second chemo session Wednesday. These treatments are 21 days apart. The first treatment left her mildly nauseous and a little tired. It also depleted her red and white blood cells just to the edge of the acceptable levels. She had, at different times, a shot to increase white blood cell production and a long lasting one to increase hemoglobin production. You know, I'm not sure I got the wording right on that, but it's the essence of what they want her body to do. Her reactions to both were minimal.
Thursday she had another long lasting shot, this time for white blood cell production. It's a different drug than the first time, stronger and longer lasting. Between this shot and the second chemo treatment, Janette is not feeling well at all. More nausea, no vomiting, and much more fatigue. I wanted to tell everyone she was ready to take your short phone calls and very short visits, but now I'm not sure. Let's see what happens.
The oncologist ordered the second white blood cell shot not because Janette's count was so low but because we thought we may drive to Louisiana. Her eldest sister is in the hospital, very ill. We are waiting to see what happens to decide what we will do. Please include Aunt Sis and her family in your prayers along with Aunt Judy and Uncle Carrol and their family. I don't know if I mentioned this before in my blog: my Uncle Carrol also has lung cancer, a different form, diagnosed around the same time as my mother's. Aunt Judy's visit was a special gift.
And for the family who are reading, Aunt Eliska is now a 20 year cancer survivor! Last month she had several tests, including a PET scan, to look for any traces of cancer growth. Last week we met with Aunt Eliska's new oncologist: not a trace of cancer found! Some good news for this family. She also had an ultrasound for vascular blockage in her neck, none found! And the oncologist (and I) pushed her to get a blood sugar monitor and check her levels every hour for one day. Again, no problems, no sign of pre-diabetes!
And also congratulations to the new babies born and about to be born to our friends and family! Janette was (and is) checking her email each day for the news.
Wednesday, June 24, 2009
Great Two Days
Janette has been doing great since she had a liter of fluids on Monday. In many ways, she's been better than I've seen since I've been here. She's still often tired, but everything else is improving. Well, her voice is getting worse, but that is probably a side effect of all the treatments.
We saw the oncologist today. He's lowering her chemo dose slightly but staying with the same formula. The protocol is every 21 days, so the next chemo session is July 8th. We also all decided for Janette to get fluids twice per week, each Monday and Thursday. Even though she's now drinking at least 40oz of water a day, it doesn't seem to be enough. Before our very eyes, she shrivels up like a raisin. No joking, we see the difference day to day and even as the day progresses. Fluids and electrolytes via her port seems to be the easiest solution.
Aunt Judy, Jill and Casey will be visiting for a few days. They're driving from Mississippi and will get in tomorrow night. This means no more blog entries for a while...again.
Next appts: Fluids, Thursday, Monday; radiation doctor follow-up, Wednesday; chemo and oncologist, next Wednesday.
We saw the oncologist today. He's lowering her chemo dose slightly but staying with the same formula. The protocol is every 21 days, so the next chemo session is July 8th. We also all decided for Janette to get fluids twice per week, each Monday and Thursday. Even though she's now drinking at least 40oz of water a day, it doesn't seem to be enough. Before our very eyes, she shrivels up like a raisin. No joking, we see the difference day to day and even as the day progresses. Fluids and electrolytes via her port seems to be the easiest solution.
Aunt Judy, Jill and Casey will be visiting for a few days. They're driving from Mississippi and will get in tomorrow night. This means no more blog entries for a while...again.
Next appts: Fluids, Thursday, Monday; radiation doctor follow-up, Wednesday; chemo and oncologist, next Wednesday.
Monday, June 22, 2009
Last Week: Wendy Visit, Chemo
Wendy and Mike were here for several days last week. Wendy visited with Janette and made plans to fly back here in August. Aunt Eliska also spent time visiting. We had a full, lively house for a while.
Janette also had chemotherapy the Wednesday of their visit. The steroids in the mix leave her with lots of energy and good feelings and she was able to participate more with Wendy and Mike. They made chilli, talked, watched TV shows together and we all went for a visit to my father's site at the Veteran's Cemetery.
This chemo is a completely different batch, no more cys and carboplattins. I don't have the names in front of me, but the chemicals are newer and specific to adeno (lymphatic) cancers. The side effects for Janette were much milder. I thought she might not have any at all, but unfortunately, they did start up this weekend. She has mild nausea, food aversion and extreme exhaustion. Aunt Eliska and I are already plotting to take Janette in for fluids (saline and anti nausea meds via her port) late this morning. We see the pattern and want to stop it before Janette gets so sick and dehydrated. [Update: We got fluids, she was very dehydrated, and she got a shot to increase white blood cell production in her bone marrow. Her white cell count was low. No nutrients and no fluids make cell production difficult.]
Oh yes, I forgot, the oncologist also prescribed medication to get Janette stomach muscles working again. On Wednesday's visit, I told him how Janette stomach aches more and more often. Each time she ate the portions became smaller and she complained more frequently of fulling full and sick. Apparently, some illness like cancer and diabetes can cause gastroparesis.
From the National Institute for Health web site
Gastroparesis, also called delayed gastric emptying, is a disorder in which the stomach takes too long to empty its contents. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls the movement of food from the stomach through the digestive tract. Gastroparesis occurs when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.
The medication "stimulates stomach muscle contractions to help emptying." It's been working well...when she eats.
Janette also had chemotherapy the Wednesday of their visit. The steroids in the mix leave her with lots of energy and good feelings and she was able to participate more with Wendy and Mike. They made chilli, talked, watched TV shows together and we all went for a visit to my father's site at the Veteran's Cemetery.
This chemo is a completely different batch, no more cys and carboplattins. I don't have the names in front of me, but the chemicals are newer and specific to adeno (lymphatic) cancers. The side effects for Janette were much milder. I thought she might not have any at all, but unfortunately, they did start up this weekend. She has mild nausea, food aversion and extreme exhaustion. Aunt Eliska and I are already plotting to take Janette in for fluids (saline and anti nausea meds via her port) late this morning. We see the pattern and want to stop it before Janette gets so sick and dehydrated. [Update: We got fluids, she was very dehydrated, and she got a shot to increase white blood cell production in her bone marrow. Her white cell count was low. No nutrients and no fluids make cell production difficult.]
Oh yes, I forgot, the oncologist also prescribed medication to get Janette stomach muscles working again. On Wednesday's visit, I told him how Janette stomach aches more and more often. Each time she ate the portions became smaller and she complained more frequently of fulling full and sick. Apparently, some illness like cancer and diabetes can cause gastroparesis.
From the National Institute for Health web site
Gastroparesis, also called delayed gastric emptying, is a disorder in which the stomach takes too long to empty its contents. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls the movement of food from the stomach through the digestive tract. Gastroparesis occurs when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.
The medication "stimulates stomach muscle contractions to help emptying." It's been working well...when she eats.
Thursday, June 11, 2009
Graduation from Radiation
Janette had her last radiation treatment yesterday. They even gave her a diploma of completion. While radiation was not painful and the therapist, nurses and technicians were wonderful, it was wiping her out. Janette is glad to begin recovering.
We are also glad because Janette was not eating or drinking much. Her weight has dropped to 126.5 and she was dehydrated again. The radiation nurse and doctor sent her to chemo for fluids yesterday. 3 hours and 1 liter of saline later, she felt much better. Perhaps it even helped something shift inside of her. She's eating much more and she carries around with her a big sippy cup full of ice water. She feels so awful when she's dehydrated and undernourished and so much better after being rehydrated from a bag through her port, I think she finally has motivation to eat and drink no matter what. We'll see if this keeps up through chemotherapy.
When does chemotherapy begin? We see the oncologist next Wednesday. I have a feeling he'll want to wait a couple of more weeks to let her recover more weight and strength, but he could decide to start her that day. We'll know in a week.
We are also glad because Janette was not eating or drinking much. Her weight has dropped to 126.5 and she was dehydrated again. The radiation nurse and doctor sent her to chemo for fluids yesterday. 3 hours and 1 liter of saline later, she felt much better. Perhaps it even helped something shift inside of her. She's eating much more and she carries around with her a big sippy cup full of ice water. She feels so awful when she's dehydrated and undernourished and so much better after being rehydrated from a bag through her port, I think she finally has motivation to eat and drink no matter what. We'll see if this keeps up through chemotherapy.
When does chemotherapy begin? We see the oncologist next Wednesday. I have a feeling he'll want to wait a couple of more weeks to let her recover more weight and strength, but he could decide to start her that day. We'll know in a week.
Thursday, June 4, 2009
A Long Pause in Chemotherapy
Wednesday, we had our regular meeting with the radiation doctor and the oncologist. Janette is in the home stretch with her radiation therapy. The originally planned series is finished and they've moved to a new angle and narrow focus on the lymph nodes in her chest.
All this radiation seems to help with many of Janette's symptoms. It's also created more side effects. Her esophagus is irritated and probably inflamed. Eating and drinking irritate further the irritated tissue. Eating more than four bites is a huge chore rather than a relatively unconscious act. She's not eating much and her weight has dropped to 129 lbs.
"Just 5 more days," the nurse and doctor say, "and when it's all over you will recover quickly."
Since she can't eat easily and she's so tired from the radiation, the oncologist has decided to wait 2 more weeks before restarting chemotherapy. We see him again June 16 and then he will decide if she's ready for more.
Janette has adenocarcinoma. Here's what I found on Wikipedia.
Currently, the most common type of lung cancer in lifelong non-smokers is the adenocarcinoma. Adenocarcinomas account for approximately 10% of lung cancers. This cancer usually is seen peripherally in the lungs, as opposed to small cell lung cancer and squamous cell lung cancer, which both tend to be more centrally located. The adenocarcinoma has an increased incidence in smokers, but is also the most common type of lung cancer seen in non-smokers.
Here's an excerpt from an article from abc News.
Ill Despite Healthy Lifestyle
While no national studies have yet been done, many lung cancer specialists say they're seeing a disturbing trend of more and more non-smoking women with the disease.
"Many of them have done an excellent job of taking care of themselves," said Dr. Joan Schiller, who specializes in lung cancer in non-smoking younger women at the University of Wisconsin in Madison. "They run. They eat right."
Ten percent to 15 percent of lung cancer victims are non-smokers. Among that group, women are two to three times more likely than men to get the disease. Doctors don't know why. Hormones, second-hand smoke, diet and air pollution all are believed to be factors.
Though lung cancer is deadlier to women than other types of cancer, breast cancer gets almost 10 times more research funding per death than lung cancer, Schiller said.
"These women are tragic victims of the fact that they have a disease that is associated with smoking," Schiller added.
Adding to the deadliness of lung cancer, the symptoms, which include shortness of breath and a chronic cough, often are misdiagnosed as asthma.
Here's another excerpt.
How Can Non-Smokers Develop Lung Cancer?
Researchers believe that second hand smoke plays a prominent role in lung cancer development in non-smokers. Limiting first hand and second hand exposure is essential for both men and women to reducing the risk factor for lung cancer.
Lung cancer can develop because of radon inbedded in dirt below residential homes. Tests are available to check the radon level in and around your home. Many of these tests are available free of charge from you local health department.
Estrogen may also be a factor in lung cancer development, just like in breast cancer development in women. Studies suggest that blocking estrogen may prevent lung cancer from growing.
All three of these points have been long term factors in Janette's life: ~42 years of second hand smoke, lots of radon in Florida and 20 years of estrogen replacement therapy. Quite the set up for developing lung cancer.
All this radiation seems to help with many of Janette's symptoms. It's also created more side effects. Her esophagus is irritated and probably inflamed. Eating and drinking irritate further the irritated tissue. Eating more than four bites is a huge chore rather than a relatively unconscious act. She's not eating much and her weight has dropped to 129 lbs.
"Just 5 more days," the nurse and doctor say, "and when it's all over you will recover quickly."
Since she can't eat easily and she's so tired from the radiation, the oncologist has decided to wait 2 more weeks before restarting chemotherapy. We see him again June 16 and then he will decide if she's ready for more.
Janette has adenocarcinoma. Here's what I found on Wikipedia.
Currently, the most common type of lung cancer in lifelong non-smokers is the adenocarcinoma. Adenocarcinomas account for approximately 10% of lung cancers. This cancer usually is seen peripherally in the lungs, as opposed to small cell lung cancer and squamous cell lung cancer, which both tend to be more centrally located. The adenocarcinoma has an increased incidence in smokers, but is also the most common type of lung cancer seen in non-smokers.
Here's an excerpt from an article from abc News.
Ill Despite Healthy Lifestyle
While no national studies have yet been done, many lung cancer specialists say they're seeing a disturbing trend of more and more non-smoking women with the disease.
"Many of them have done an excellent job of taking care of themselves," said Dr. Joan Schiller, who specializes in lung cancer in non-smoking younger women at the University of Wisconsin in Madison. "They run. They eat right."
Ten percent to 15 percent of lung cancer victims are non-smokers. Among that group, women are two to three times more likely than men to get the disease. Doctors don't know why. Hormones, second-hand smoke, diet and air pollution all are believed to be factors.
Though lung cancer is deadlier to women than other types of cancer, breast cancer gets almost 10 times more research funding per death than lung cancer, Schiller said.
"These women are tragic victims of the fact that they have a disease that is associated with smoking," Schiller added.
Adding to the deadliness of lung cancer, the symptoms, which include shortness of breath and a chronic cough, often are misdiagnosed as asthma.
Here's another excerpt.
How Can Non-Smokers Develop Lung Cancer?
Researchers believe that second hand smoke plays a prominent role in lung cancer development in non-smokers. Limiting first hand and second hand exposure is essential for both men and women to reducing the risk factor for lung cancer.
Lung cancer can develop because of radon inbedded in dirt below residential homes. Tests are available to check the radon level in and around your home. Many of these tests are available free of charge from you local health department.
Estrogen may also be a factor in lung cancer development, just like in breast cancer development in women. Studies suggest that blocking estrogen may prevent lung cancer from growing.
All three of these points have been long term factors in Janette's life: ~42 years of second hand smoke, lots of radon in Florida and 20 years of estrogen replacement therapy. Quite the set up for developing lung cancer.
Thursday, May 28, 2009
No Chemo This Week
The oncologist, Dr. Alamar, (who is younger than me, by the way) decided the new chemo is not the right chemical for Janette. He also decided to skip this week since Janette still felt nauseous from the last round and the radiation seems to be working so well.
Dr. Alamar is very concerned about Janette's quality of life. He says they are not trying to extend her life so she can lie around in exhaustion and nausea. This is not good and means his plan must be modified. The point is for her to lead a normal a life as possible for as long as possible. So, the break from chemo, a more gentle approach to chemo than was planned for when she finishes radiation and a prescription for Ritalin.
Yes, HD/ADD Ritalin. What is a sedative in children is a mild stimulate in adults. Its purpose is to help Janette have more energy and get moving more. If she moves more, she'll have even more energy and more fun and more appetite and more quality of life and so on. Seems to be working without any side effects. Janette should be able to do what's fun for her, he says, like shopping for bargains with Aunt Eliska.
We don't feel so good today. Perhaps coincidence, perhaps a mild virus. We'll see tomorrow. Janette's immune system is good enough that a virus is not a problem.
Dr. Alamar is very concerned about Janette's quality of life. He says they are not trying to extend her life so she can lie around in exhaustion and nausea. This is not good and means his plan must be modified. The point is for her to lead a normal a life as possible for as long as possible. So, the break from chemo, a more gentle approach to chemo than was planned for when she finishes radiation and a prescription for Ritalin.
Yes, HD/ADD Ritalin. What is a sedative in children is a mild stimulate in adults. Its purpose is to help Janette have more energy and get moving more. If she moves more, she'll have even more energy and more fun and more appetite and more quality of life and so on. Seems to be working without any side effects. Janette should be able to do what's fun for her, he says, like shopping for bargains with Aunt Eliska.
We don't feel so good today. Perhaps coincidence, perhaps a mild virus. We'll see tomorrow. Janette's immune system is good enough that a virus is not a problem.
Tuesday, May 26, 2009
Better Now
I went to today's radiation appt after all and I talked with the chemo nurses about how nauseous Janette has been. I also asked to see someone before her chemo treatment tomorrow.
So, tomorrow we see the oncologist before chemo. I want to make sure the dosage is not too strong and I want to ask if this is really the right formula for her. For today, the nurse suggested an IV of nausea medication and steroids and she guessed that Janette was dehydrated and also needed fluids.
She was right. Two hours and 1 liter of saline later, Janette was feeling much better. When we came home, she ate all my leftovers from breakfast. That was a lot of sausage, potatoes and vegetables. She drank a large protein shake and ate a small bowl of fruit and half a ham and cheese sandwich.
We also learned that on holidays, the chemo room is open on the Sunday and Monday for 2 hours for this very thing. We could have saved Janette two days of misery. Now we all know for next time.
So, tomorrow we see the oncologist before chemo. I want to make sure the dosage is not too strong and I want to ask if this is really the right formula for her. For today, the nurse suggested an IV of nausea medication and steroids and she guessed that Janette was dehydrated and also needed fluids.
She was right. Two hours and 1 liter of saline later, Janette was feeling much better. When we came home, she ate all my leftovers from breakfast. That was a lot of sausage, potatoes and vegetables. She drank a large protein shake and ate a small bowl of fruit and half a ham and cheese sandwich.
We also learned that on holidays, the chemo room is open on the Sunday and Monday for 2 hours for this very thing. We could have saved Janette two days of misery. Now we all know for next time.
Monday, May 25, 2009
More Nausea
The new chemo isn't the answer after all. Today, Janette was more nauseous than any other time before. She even looks drawn and ill. The last two days have been awful for her.
Tomorrow is my day off from radiation transporting, but Aunt Eliska will go to the chemo nurses to talk about this chemo and about getting better nausea medication.
This is a good time for prayers and meditations to bring comfort and ease.
Tomorrow is my day off from radiation transporting, but Aunt Eliska will go to the chemo nurses to talk about this chemo and about getting better nausea medication.
This is a good time for prayers and meditations to bring comfort and ease.
Saturday, May 23, 2009
Doctor Visits and Chemo Change
We've had a busy second half of the week and we also had that low pressure system go through Florida. Wow! We got inches of much needed rain, lots of lightning, yesterday a funnel cloud and a three day headache for me.
The bigger news is from Wednesday. Between radiation and chemo sessions, we had appointments with the radiation doctor and the oncologist. Both are very pleased with the results of Janette's treatment. Really pleased. Her back pain is gone. Her voice is stronger and occasionally normal. And she now rarely chokes and coughs from drinking and talking. She was scheduled to end radiation soon, but since she's responded so well, they decided on 8-10 more sessions on her chest on all those affected lymph nodes.
The oncologist also decided Janette had too much nausea with the chemo he had prescribed, cisplatin. So on Wednesday, she had a new chemical--carboplatin. Janette's had much less nausea and food aversion. I'm also not hearing her complain of the other digestive side effects that usually show up by Saturday. Yeah! Wonderful! This is a great change!
Carboplatin does come with other side effects good and bad. Janette will loose her hair, but after 3 weeks of nausea, she could care less. To the good, carboplatin comes each week with 10mg of a steriod in the IV.
Wow, again! Wednesday, Janette was on speed. She saw me dusting and cleaning and so she did a major cleaning and washing on her bedroom. She didn't sleep, but spent half the night thinking about cooking food and the other half cooking and eating it. The pool people came out on Thursday to clean and do minor repairs on the pool filter. Janette was all over the place, squatting at the curb and working with the street drain, cleaning and moving stuff around the patio, bustling here and there as the pool man worked. She did finally exhaust herself, but still sorted papers for hours that evening. Don't worry, she's not overdoing it. Her body wouldn't let her. Moving around and getting her blood flowing can only help her heal and feel better.
The bigger news is from Wednesday. Between radiation and chemo sessions, we had appointments with the radiation doctor and the oncologist. Both are very pleased with the results of Janette's treatment. Really pleased. Her back pain is gone. Her voice is stronger and occasionally normal. And she now rarely chokes and coughs from drinking and talking. She was scheduled to end radiation soon, but since she's responded so well, they decided on 8-10 more sessions on her chest on all those affected lymph nodes.
The oncologist also decided Janette had too much nausea with the chemo he had prescribed, cisplatin. So on Wednesday, she had a new chemical--carboplatin. Janette's had much less nausea and food aversion. I'm also not hearing her complain of the other digestive side effects that usually show up by Saturday. Yeah! Wonderful! This is a great change!
Carboplatin does come with other side effects good and bad. Janette will loose her hair, but after 3 weeks of nausea, she could care less. To the good, carboplatin comes each week with 10mg of a steriod in the IV.
Wow, again! Wednesday, Janette was on speed. She saw me dusting and cleaning and so she did a major cleaning and washing on her bedroom. She didn't sleep, but spent half the night thinking about cooking food and the other half cooking and eating it. The pool people came out on Thursday to clean and do minor repairs on the pool filter. Janette was all over the place, squatting at the curb and working with the street drain, cleaning and moving stuff around the patio, bustling here and there as the pool man worked. She did finally exhaust herself, but still sorted papers for hours that evening. Don't worry, she's not overdoing it. Her body wouldn't let her. Moving around and getting her blood flowing can only help her heal and feel better.
Friday, May 15, 2009
Port Procedure Went Well
Janette is fine. The procedure went very well. So far, no pain or other side effects. She was eating, up and around and had more energy than I'd seen in a while. The procedure itself took 15 minutes. We were at the hospital from 8:45 to 2:30. Amazing.
Wednesday, May 13, 2009
Eating, Weight and Nausea
Today, the scale in the chemo room said Janette is only 4 lbs under her original weight.
The chemo nurses decided Janette is still too nauseous. She's not vomiting but thought of food is yucky and she can't make herself eat much. The nurses say this is still nausea and they prescribed stronger nausea fighting medication to help. Hopefully, this will allow her to eat and drink more and be more comfortable.
As always, we are so appreciative of the care and positive friendliness of all the staff at the Gulfcoast Cancer Institute in Largo.
Janette has minor surgery tomorrow to implant a port for chemotherapy. I'm sorry I forgot to tell y'all about it sooner. We learned today her blood levels are still good and the surgery is on, outpatient at Morton Plant hospital with it's fantastic views of Clearwater Bay.
And for the family who are reading, Aunt Eliska has two checkups this week, eyes and general health. She is serious about watching her diet and salt intake and taking good care of herself. She's even trying some of the health food mixtures I've ordered for Janette. All of you who know her know this is amazing and a real commitment to healing.
The chemo nurses decided Janette is still too nauseous. She's not vomiting but thought of food is yucky and she can't make herself eat much. The nurses say this is still nausea and they prescribed stronger nausea fighting medication to help. Hopefully, this will allow her to eat and drink more and be more comfortable.
As always, we are so appreciative of the care and positive friendliness of all the staff at the Gulfcoast Cancer Institute in Largo.
Janette has minor surgery tomorrow to implant a port for chemotherapy. I'm sorry I forgot to tell y'all about it sooner. We learned today her blood levels are still good and the surgery is on, outpatient at Morton Plant hospital with it's fantastic views of Clearwater Bay.
And for the family who are reading, Aunt Eliska has two checkups this week, eyes and general health. She is serious about watching her diet and salt intake and taking good care of herself. She's even trying some of the health food mixtures I've ordered for Janette. All of you who know her know this is amazing and a real commitment to healing.
Tuesday, May 12, 2009
Continuing with Treatments
Succumbing to pressure from Aunt Eliska and I, Janette is now trying to eat and drink more. As of today, she's lost 6 pounds from the start of treatment but she's eating good, protein meals-- 4 times yesterday and 3 times already today. She's also drinking more of her homeopathic drink and I've notice less coughing and choking as a result.
I forgot to say last post that Janette is less short of breath. The Lung doctor prescribed an inhaler, which seems to be working.
Janette is more tired, that's normal with the radiation, and is having pain in her shoulder, that's not so normal.
We next see the oncologist March 20.
I forgot to say last post that Janette is less short of breath. The Lung doctor prescribed an inhaler, which seems to be working.
Janette is more tired, that's normal with the radiation, and is having pain in her shoulder, that's not so normal.
We next see the oncologist March 20.
Saturday, May 9, 2009
Not much change
Janette's symptoms and reactions to treatment haven't change much since I last wrote. Her pain level is much lower. If she takes her nausea medication, she's much less nauseous and can eat. She's been coughing and choking a little more but she also hasn't been drinking as much of her homeopathic cocktail. Right now she needs to do more, eat more and drink more. But, of course, doing so is not easy with chemotherapy and radiation.
And again, Janette thanks everyone for your cards and emails.
And again, Janette thanks everyone for your cards and emails.
Monday, May 4, 2009
Radiation and Chemo Effects
On the positive, Janette's leg and back pain is much better and her coughing is daily but infrequent. Less pain is very, very positive. On the negative, the side effects have arrived. She doesn't want to eat. The smell of food (particularly, not her food) is making her nauseous in a strange way. The radiation has somehow caused her to breathe more shallowly and feel short of breath. Fortunately, she is not nauseous on eating and can eat. She's sleeping in the sewing room away from the kitchen and can escape the smells. And she really isn't short of breath and has very good oxygen saturation.
I haven't been to a regular American doctor in 10 years. Well, last year we had an immediate care center visit for a very high fever. The quality of care seemed much higher than I remembered. Has there been a change in health care philosophy in the U.S. or was I just gone so long that I forgot?
My point of all this is the level of concern and care from all the doctors, nurses, aides and technicians Janette sees is wonderful. Today at radiation, I stopped the radiation nurse in the hall to talk about those side effects. She immediately had time for us, did tests, consulted with the chemo nurses in another part of the building, called the doctor at the other office (who then consulted on the phone with the lung doctor, who was home sick with the flu), and then spent more time talking and listening to me while Janette received her radiation treatment. After the treatment, Janette was a little dizzy. So the nurse got a wheelchair, wheeled us over to the chemo room and nurses, stayed with us to talk about Janette's nausea, got us samples of anti-nausea medication (meanwhile the chemo nurse is automatically calling in a prescription to our pharmacy because they already have the number on file,) and then wheeled us out the door all the way to the car, the whole time with the patience and calmness and focus as if we were her only patient (we weren't).
And then the lung doctor: he's home with the flu, but he consults with the radiation doctor and decides he wants to see Janette as soon as possible. When I called his office, his schedule is packed and we're a bit concerned about the flu and chemo. So, they text-message him at home and he calls them back and we have a Thursday morning appointment. We could have had tomorrow, he would have come in to see her then, but with the flu we put it off a few days.
It's just that everyone seems to truly care about her health and put all his effort into getting her the best care possible. I am very grateful and Janette spends a relatively short amount of time in physical distress.
The anti-nausea medication seems to be working. We got a pressed Cuban sandwich to go after radiation and she just came out of her room to eat more of the leftovers. Great news!
I haven't been to a regular American doctor in 10 years. Well, last year we had an immediate care center visit for a very high fever. The quality of care seemed much higher than I remembered. Has there been a change in health care philosophy in the U.S. or was I just gone so long that I forgot?
My point of all this is the level of concern and care from all the doctors, nurses, aides and technicians Janette sees is wonderful. Today at radiation, I stopped the radiation nurse in the hall to talk about those side effects. She immediately had time for us, did tests, consulted with the chemo nurses in another part of the building, called the doctor at the other office (who then consulted on the phone with the lung doctor, who was home sick with the flu), and then spent more time talking and listening to me while Janette received her radiation treatment. After the treatment, Janette was a little dizzy. So the nurse got a wheelchair, wheeled us over to the chemo room and nurses, stayed with us to talk about Janette's nausea, got us samples of anti-nausea medication (meanwhile the chemo nurse is automatically calling in a prescription to our pharmacy because they already have the number on file,) and then wheeled us out the door all the way to the car, the whole time with the patience and calmness and focus as if we were her only patient (we weren't).
And then the lung doctor: he's home with the flu, but he consults with the radiation doctor and decides he wants to see Janette as soon as possible. When I called his office, his schedule is packed and we're a bit concerned about the flu and chemo. So, they text-message him at home and he calls them back and we have a Thursday morning appointment. We could have had tomorrow, he would have come in to see her then, but with the flu we put it off a few days.
It's just that everyone seems to truly care about her health and put all his effort into getting her the best care possible. I am very grateful and Janette spends a relatively short amount of time in physical distress.
The anti-nausea medication seems to be working. We got a pressed Cuban sandwich to go after radiation and she just came out of her room to eat more of the leftovers. Great news!
Saturday, May 2, 2009
Phone Calls
We've been getting more phone calls asking about Janette's health. Thank you everyone for your care and concern and your good wishes and hopes. We also realized we weren't clear enough about why we started this blog.
Everyone knows now that Janette doesn't talk very well and most folks have not been expecting to talk with her. I don't mind talking. I rather talk than write. But, hearing me describe her current state and hearing me explain the what and where of the cancer was overhelming for Janette. She realized early on that if she wanted to stay positive, she couldn't listen to me have those phone calls. That's why we started this blog, so I could update everyone silently.
If you wish to call to say hi to Janette and briefly say you're thinking of her, that would be fine. Please understand she's beginning to feel unwell from her treatments and may not be able to take your call. Also please understand that talking on the phone is extra tiring for her. With her voice box not working right, she must use lots of extra energy to get her voice out.
Understanding all that, a quick call that's not about her health would be fine.
Janette also realizes she hasn't answered many emails. She does like reading what you write and appreciates the contact. Sitting at the computer is not comfortable right now and looking at the screen is hurting her eyes. She likes reading her email and looking at links people send and reading your funny stories. Please don't take her silence as disinterest. She is very grateful.
So, thank you again to everyone for your care, love, hope and email connection.
Cathy and Janette
Everyone knows now that Janette doesn't talk very well and most folks have not been expecting to talk with her. I don't mind talking. I rather talk than write. But, hearing me describe her current state and hearing me explain the what and where of the cancer was overhelming for Janette. She realized early on that if she wanted to stay positive, she couldn't listen to me have those phone calls. That's why we started this blog, so I could update everyone silently.
If you wish to call to say hi to Janette and briefly say you're thinking of her, that would be fine. Please understand she's beginning to feel unwell from her treatments and may not be able to take your call. Also please understand that talking on the phone is extra tiring for her. With her voice box not working right, she must use lots of extra energy to get her voice out.
Understanding all that, a quick call that's not about her health would be fine.
Janette also realizes she hasn't answered many emails. She does like reading what you write and appreciates the contact. Sitting at the computer is not comfortable right now and looking at the screen is hurting her eyes. She likes reading her email and looking at links people send and reading your funny stories. Please don't take her silence as disinterest. She is very grateful.
So, thank you again to everyone for your care, love, hope and email connection.
Cathy and Janette
Friday, May 1, 2009
Pain Better
Janette's leg pain is better now. I assume everything she is taking and having done is making a difference. She also decided to move more and fear less the potential of pain. It would zap her sort of randomly and that caused tension. Also, Aunt Eliska and I are letting her do more for herself and she feels up do doing more. And on and on it goes in a positive spirial of more activity and less pain.
I, Cathy, am also doing better. I was very tired all the time, mostly from stress and tension; I wasn't doing that much work. Now I seem to have caught up with myself and what is happening and have found some of my own rhythm. Of course both Janette and Aunt Eliska have their own strong rhythm: Let's do it now! So, I don't have much of a chance keeping mine.
Slowly, we're catching up on the needed house maintenance. William has helped and Aunt Eliska, when she comes over, seems to have more energy than I. I pace myself, and so does Janette. You'll have to ask Aunt Eliska what she does. Tomorrow, the pool! And maybe some mopping I've been putting off.
By the way, Janette and Eliska do enjoy reading your comments. So, keep them coming! And if anyone has a good picture of Janette, please send it.
And "Hey" to Uncle Carroll and Amanda. We're enjoying your blog, too!
Next appts: a free weekend! Radiation resumes Monday morning. Chemo each Wednesday.
I, Cathy, am also doing better. I was very tired all the time, mostly from stress and tension; I wasn't doing that much work. Now I seem to have caught up with myself and what is happening and have found some of my own rhythm. Of course both Janette and Aunt Eliska have their own strong rhythm: Let's do it now! So, I don't have much of a chance keeping mine.
Slowly, we're catching up on the needed house maintenance. William has helped and Aunt Eliska, when she comes over, seems to have more energy than I. I pace myself, and so does Janette. You'll have to ask Aunt Eliska what she does. Tomorrow, the pool! And maybe some mopping I've been putting off.
By the way, Janette and Eliska do enjoy reading your comments. So, keep them coming! And if anyone has a good picture of Janette, please send it.
And "Hey" to Uncle Carroll and Amanda. We're enjoying your blog, too!
Next appts: a free weekend! Radiation resumes Monday morning. Chemo each Wednesday.
Thursday, April 30, 2009
Radiation and Chemotherapy and MRI
First, Janette "has nothing in the brain!" As Aunt Eliska joked. No cancer showed up on the MRI for her brain. This is great news!
Janette has now had 3 radiation sessions, 2 on the low back and 3 on the chest, and one chemotherapy session. All are making her tired, but no nausea and no weight loss. She just finished eating a good sized meal of steak, collards, rice and grilled onions. Four weeks of radiation, four sessions (one/week) of milder chemo and then more weeks with much stronger chemo.
Janette's voice and breathing are also better, but unfortunately, her leg pain is much worse. Each day the pain increases and she can move less. The back radiation is supposed to help this pain, so we have hope. She also has pain killers that she now will start taking regularly rather than occasionally. Hopefully that will also make a difference.
Janette has now had 3 radiation sessions, 2 on the low back and 3 on the chest, and one chemotherapy session. All are making her tired, but no nausea and no weight loss. She just finished eating a good sized meal of steak, collards, rice and grilled onions. Four weeks of radiation, four sessions (one/week) of milder chemo and then more weeks with much stronger chemo.
Janette's voice and breathing are also better, but unfortunately, her leg pain is much worse. Each day the pain increases and she can move less. The back radiation is supposed to help this pain, so we have hope. She also has pain killers that she now will start taking regularly rather than occasionally. Hopefully that will also make a difference.
Sunday, April 26, 2009
Finally, Another Blog Entry
OK, OK, I haven’t given y’all an update in a while, but we’ve been very busy: 4 medical offices, two scans, a visit from Aunt Jackie and Uncle Terry, a rest day and yesterday William installed our new water filter and fixed a leaky drain pipe. Aunt Eliska works each time she comes over and we did some extra cleaning and patio work this week as well. Thank you to everyone for your hard work and visits.
Again, we like our doctors, we like the new building and we like their staff. Tuesday we met the radiation therapist, Dr. Tralins, for a consultation. He, the lung doctor and the oncologist decided the best first round of therapy is moderate radiation, 5 times a week, in the center of the chest where many of the effected lymph nodes live, including the one that is pushing on the nerve that goes to the vocal cord. With radiation, Janette will also start a course of milder chemotherapy. We’ll learn more about the chemotherapy plan Wednesday, when we revisit the oncologist. Radiation starts Monday, 8:30 am.
One of the two scans was a CAT scan to pinpoint where to focus the radiation. Now Janette, who refuses to pierce her ears, who thinks tattoos are gross and barbaric, is tattooed herself. “That hurt!” She said. “It’s like someone sticking you with a sewing needle. How can they stand to have that done all over their bodies?!” Three dots, that we can’t even find, on her chest to help the radiation techs line-up their equipment correctly.
The other scan was a MRI to look for cancer growth in the brain. Lung cancers often move easily into the brain and the oncologist wants to have all the data he can. Janette did very well with this scan that everyone seems to hate. I know, I was in the room with her and I needed earplugs the machine was so loud. At the time, she was coughing easily when she lay flat, but she said her prayers, put herself in a trance and lasted the whole 45 minutes without coughing or back pain.
Janette’s coughing and choking while talking and swallowing is better. The swallow study (eating and drinking a bunch of barium laced foods while being X-Ray) gave her a technique for swallowing water and pills. It helps when she remembers to do it, but we think the biggest help for the coughing is the homeopathics she has been using for almost two week.
Coughing is better but now pain is worse, particularly in her back and legs. So Friday, we got our first pain medication, non-narcotic, and Monday afternoon we have our second homeopathic visit where Janette will get some homeopathic meds for pain. We all have good hope for the homeopathics and the pain since we see how well they’ve worked so far.
Next appts: Monday, radiation. Monday, homeopathic. Tuesday, speech therapy. Wednesday, oncologist. And radiation each week day.
Again, we like our doctors, we like the new building and we like their staff. Tuesday we met the radiation therapist, Dr. Tralins, for a consultation. He, the lung doctor and the oncologist decided the best first round of therapy is moderate radiation, 5 times a week, in the center of the chest where many of the effected lymph nodes live, including the one that is pushing on the nerve that goes to the vocal cord. With radiation, Janette will also start a course of milder chemotherapy. We’ll learn more about the chemotherapy plan Wednesday, when we revisit the oncologist. Radiation starts Monday, 8:30 am.
One of the two scans was a CAT scan to pinpoint where to focus the radiation. Now Janette, who refuses to pierce her ears, who thinks tattoos are gross and barbaric, is tattooed herself. “That hurt!” She said. “It’s like someone sticking you with a sewing needle. How can they stand to have that done all over their bodies?!” Three dots, that we can’t even find, on her chest to help the radiation techs line-up their equipment correctly.
The other scan was a MRI to look for cancer growth in the brain. Lung cancers often move easily into the brain and the oncologist wants to have all the data he can. Janette did very well with this scan that everyone seems to hate. I know, I was in the room with her and I needed earplugs the machine was so loud. At the time, she was coughing easily when she lay flat, but she said her prayers, put herself in a trance and lasted the whole 45 minutes without coughing or back pain.
Janette’s coughing and choking while talking and swallowing is better. The swallow study (eating and drinking a bunch of barium laced foods while being X-Ray) gave her a technique for swallowing water and pills. It helps when she remembers to do it, but we think the biggest help for the coughing is the homeopathics she has been using for almost two week.
Coughing is better but now pain is worse, particularly in her back and legs. So Friday, we got our first pain medication, non-narcotic, and Monday afternoon we have our second homeopathic visit where Janette will get some homeopathic meds for pain. We all have good hope for the homeopathics and the pain since we see how well they’ve worked so far.
Next appts: Monday, radiation. Monday, homeopathic. Tuesday, speech therapy. Wednesday, oncologist. And radiation each week day.
Friday, April 17, 2009
Visit to the Oncologist
Yesterday, Janette, Aunt Eliska and I visited the oncologist. Doesn’t that sound like the opening line for a joke? The joke is each of us came out of there with a slightly different story of what was said and what is going to happen. Fortunately, the doctor knows what he is going to do and doesn’t need our consensus.
First, we liked Dr. Alemar very much. He was straightforward, kind, listened well and seemed very knowledgeable and up-to-date on the latest research. He talked about overall health and quality of life, gave no prognosis on life expectancy but let us know the possibility is strong for years as opposed to months. We all felt positive and relieved after our visit.
His first priority is the vocal cord paralysis and maybe radiation therapy for some of the bone cancer to relieve the pain that just may be starting. With one vocal cord paralyzed, there’s a fair risk of Janette developing aspirant pneumonia. Chemotherapy greatly stresses (represses?) the immune system and Dr. Alemar is worried about the pneumonia risk. He wants to do all he can to fix or lessen that problem. We have a swallow study scheduled for Tuesday and when the ENT doctor gets the oncology consultation report, he will likely schedule other studies.
Dr. Alemar is also ordering a study of various chemo treatments on the biopsied lymph node cells from two weeks ago. He has a couple of combinations in mind, based on his conversation with Janette about her symptoms, and will see what is effective in those cells. This oncology group has a brand new office building 4 blocks from Aunt Eliska’s house and about 1 mile from Janette’s. The office is new, the equipment is new and the chemo room is supposed to be very comfortable with a beautiful view of trees and plants. We were comforted by this image and by the new radiation technology and equipment.
Cathy
Next appointments: 4-21, swallow study and radiation therapist consultation.
First, we liked Dr. Alemar very much. He was straightforward, kind, listened well and seemed very knowledgeable and up-to-date on the latest research. He talked about overall health and quality of life, gave no prognosis on life expectancy but let us know the possibility is strong for years as opposed to months. We all felt positive and relieved after our visit.
His first priority is the vocal cord paralysis and maybe radiation therapy for some of the bone cancer to relieve the pain that just may be starting. With one vocal cord paralyzed, there’s a fair risk of Janette developing aspirant pneumonia. Chemotherapy greatly stresses (represses?) the immune system and Dr. Alemar is worried about the pneumonia risk. He wants to do all he can to fix or lessen that problem. We have a swallow study scheduled for Tuesday and when the ENT doctor gets the oncology consultation report, he will likely schedule other studies.
Dr. Alemar is also ordering a study of various chemo treatments on the biopsied lymph node cells from two weeks ago. He has a couple of combinations in mind, based on his conversation with Janette about her symptoms, and will see what is effective in those cells. This oncology group has a brand new office building 4 blocks from Aunt Eliska’s house and about 1 mile from Janette’s. The office is new, the equipment is new and the chemo room is supposed to be very comfortable with a beautiful view of trees and plants. We were comforted by this image and by the new radiation technology and equipment.
Cathy
Next appointments: 4-21, swallow study and radiation therapist consultation.
Tuesday, April 14, 2009
Doctors appointments
We finally got appointments to see the oncologist (4-17) and radiation therapist (4-21). Cathy had to make several calls to get an appointment for this week. She is a great help to me, relieving me of the tension of going through doctors, driving me places, cooking, running errands, etc. Of course, Eliska is right beside her making sure my time and energy is concentrated only on getting better. After the initial shock of the diagnosis, I'm getting better at dealing with it.
Of course, all your prayers and concerns have helped. Thank you all so very much.
Janette
Of course, all your prayers and concerns have helped. Thank you all so very much.
Janette
Sunday, April 12, 2009
Welcome
Welcome to our blog on Janette's health. We hope this site will make communicating easier with everyone. Check here for upcoming appointments, diagnosis, condition and the latest news.
Many people have asked what they can do to help. Here's a simple, very supportive thing you can do: When sending email or calling Janette, talk about everyday life things and not about her health or your regret for her illness. The cancer and the potential negative consequences become more real to her when we talk or write to her about the cancer. She does want to be in contact with all of you, though she may not have the energy to reply. So, please write when you feel like it and we'll help her maintain the positive bubble she's creating around herself.
Next scheduled appointment: April 21, swallow study.
Many people have asked what they can do to help. Here's a simple, very supportive thing you can do: When sending email or calling Janette, talk about everyday life things and not about her health or your regret for her illness. The cancer and the potential negative consequences become more real to her when we talk or write to her about the cancer. She does want to be in contact with all of you, though she may not have the energy to reply. So, please write when you feel like it and we'll help her maintain the positive bubble she's creating around herself.
Next scheduled appointment: April 21, swallow study.
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