Monday, August 31, 2009
Changes as of Last Thursday
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'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
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!
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
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
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
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.