Dear Friends and Family,
A lot has happened since I last blogged with you. I am still home from the hospital after my stay for
shortness of breath and the problems we found in my lungs. However, I have quite a fight ahead of me. It has not been easy physically, mentally or in any other way. I started out well, living within the guidelines of my new diet, mostly diabetic due to the steroid I am on. Then, about 4 days later, everything hit the wall. I started to have no appetite, began to grow weak, and was not sleeping at night at all. We realized later that I should have already been tapering off of the steroids, but had not been given any orders from the hospital, so was on a higher dose for about a week longer that I should have been. We visited the cardiologist, who assured us things did not look worse, but had not really improved. We also found out that one of the meds I had in the hospital would not be available to me unless I had a catheter put in to measure the pressure of the backup in my lungs. (Since then, it did get approved for 90 days, so will not need that catheter yet. This med should help open the blood vessels so they can help spread the oxygen a little better.)
On Thursday, we traveled to UCSF, which in retrospect, we realized we should not have gone, as it totally wore me out, and then I managed to press the wrong button when I got out of the car, and we were locked out with all of our stuff in it, and it was still running. No Onstar, so Matt hauled me in for my blood test, then upstairs to the appointment. I had not eaten yet, and all of the insulin and stuff we needed to check my blood sugar was locked in the car. God is good, in that there was a locksmith right across the street from the hospital, and he was available. Then, we had not brought enough cash, so Matt couldn't park in the lot, so he had to find a handicapped spot three blocks away. Back up to me; check the blood sugar and get a shot; choke down a sandwich; be ready to meet with everyone there. By the time the fellow and the good doctor walked in the door, we were ready to leave. We were exhausted, and could have handled the appointment over the phone. Really, no new news other that what I had gone through in the hospital. Well, one big piece of news is that they have pulled me off all chemo. They cannot discount that it is contributing to the problems, so I am done for the short term. They also wanted us to know that the cancer, and what it happening in my lungs are connected. I had thought of them as two things, and once the one was taken care of, we could move onto the other. Not so. They are connected, and the one in my lungs just may be one that I may not beat. While we continue to fight, the fight could be too much.
On Friday, we were in Dr. Duncan's office as I just couldn't take it anymore. The steroids they put me on don't allow me to sleep, and actually give me huge bouts of anxiety. I was having problems eating, then swallowing. So, at first, they put me on Ambien, so I could sleep, then realized that Ambien and the steroid work against each other, so I didn't sleep at all. So they put me on Soroquel, which really seemed to help me sleep, until I realized I was having a horrible time swallowing, literally chewing my food to a pulp, and still not able to choke it down. So they took me off the Soroquel, which is known to cause this, and put me on Ativan, another anti-anxiety drug. Hopefully this one will help me be calm through the night so Matt and I can sleep. He is up with me helping me with the bathroom, and any other little thing I need in the night. But that means he doesn't sleep much either.
Since the appointment with Dr. Duncan, I now have a hospital bed, a wheelchair, and a commode, which I do use. I'm doing my best to eat and get my strength back, but it had been the hardest thing I have done yet. It is literally hour to hour, most days.
We have been blessed by all of the meals that have been prepared and dropped off, as well as the fact that many of you are waiting in the wings for your turn. Matt's mom and dad have been at the house almost everyday, as well as my RN sister-in-law, who have all helped in many humbling ways. My brother and his children have been here, I talk to my aunt in Texas regularly, and my brother from Portland flew down to spend a few days with us. But best of all was when my parents walked in the door after being gone 38 days.
We have prepared our family for the fact that anything could happen at this point. Have we given up? NO! We know that our mighty God can choose to heal at any moment. We also know that healing might take place in Heaven.
I ask that you continue to pray for my family, for Matt and endurance, wisdom, and rest for him, and that we will get the meds figured out and I will be able to tolerate them. This includes eating, working through the anxiety that sets in at any moment, and the enormous amount of strength it takes just to go to the bathroom, or the marathon it feels like I've run just to take a shower. I have a long ways to go, but am trying to stand firmly on the promises in the Word,
Join me there,
Danene
January 24,2010
Monday, January 25, 2010
Sunday, January 17, 2010
Home Again
Dear Friends,
I am home. As you know from my last blog, I was in the hospital for awhile. We thought it would be just a few days, but I ended up being there 10 days. I came home on Friday evening ready to see my family, and bringing a lot of baggage with me.
As you know, the shadings in my lungs turned out to be some kind of pulmonary infection. They are treating it with steroids, which affect my blood sugar, so Matt and I check my insulin before every meal. So far, I have been within the guidelines and have not had to have a single injection since coming home! My diet is now a low salt, low sugar, low carb diet, which is good for me but is a challenge to plan, and so on. I apparently lost a lot of weight wihle in the hospital, so am working on maintaining that, but still trying to learn to eat differently and get in all of the little meals I need to allow for the blood sugar changes.
I have an oxygen tank here and a LONG length of hose that has the run of the house with me. I still have moments of fear at not getting deep enough breaths, but I am working through those, and realizing it is okay to be afraid, just not to fall into the depths of that fear and stay there. Matt has been a rock in this area with me, supporting me and encouraging me. I also take breathing treatments every 6 hours. We skipped one since I got home, and we realized that can not happen, as I really did need it. I am still fighting a bit of a cough, which is aggravating and sometimes clogs me up, so the treatments really help open me up.
We have some friends who have loaned us a recliner that we set up in our front room, and this is bed at night for now. I still cannot lie flat as I feel a pressure on my chest and heart and it makes it harder to breathe. But this chair is very comfortable and is working very well for me. The pulmonary specialist says that this whole process will possibly take up to two to three months before it may be healed, so this is a long road ahead. I think I am getting stronger each day, and probably will not need the oxygen for that entire amount of time, but will stay on the steroids and many other drugs they are finding necessary.
I see the cardiologist on Wednesday for an update on my heart and on the medications she has placed me on, then Matt and I will go to UCSF on Thursday to meet with the oncologists. That will be the first time we will havae spoken to them since my hospital stay, although my other doctors have been in contact with them somewhat. We have a lot of questions to ask and pieces to try and place together.
I want you to know just how overwhelmed and blessed Matt and I and our kids have felt by all of your help and encouraging words. Many of you have sent cards, stopped by with meals or treats, called to check up on what you could help with, and many came to see me or called at the hospital. We are blessed. Matt's parents have been here regularly, as has my RN nurse sister-in-law, who would not leave until she was sure we knew what we were up against and how to check my insulin, give the shots (Matt practiced on an orange!), and had meals for my new diet under control. God has blessed us with her training, her merciful heart, and her availablity. It is very hard to be beholden to others, even family, but God is working on my heart in this area. Please know how thankful we are for each of you, and that we treasure and lean on your prayers.
Danene and Family
January17, 2010
I am home. As you know from my last blog, I was in the hospital for awhile. We thought it would be just a few days, but I ended up being there 10 days. I came home on Friday evening ready to see my family, and bringing a lot of baggage with me.
As you know, the shadings in my lungs turned out to be some kind of pulmonary infection. They are treating it with steroids, which affect my blood sugar, so Matt and I check my insulin before every meal. So far, I have been within the guidelines and have not had to have a single injection since coming home! My diet is now a low salt, low sugar, low carb diet, which is good for me but is a challenge to plan, and so on. I apparently lost a lot of weight wihle in the hospital, so am working on maintaining that, but still trying to learn to eat differently and get in all of the little meals I need to allow for the blood sugar changes.
I have an oxygen tank here and a LONG length of hose that has the run of the house with me. I still have moments of fear at not getting deep enough breaths, but I am working through those, and realizing it is okay to be afraid, just not to fall into the depths of that fear and stay there. Matt has been a rock in this area with me, supporting me and encouraging me. I also take breathing treatments every 6 hours. We skipped one since I got home, and we realized that can not happen, as I really did need it. I am still fighting a bit of a cough, which is aggravating and sometimes clogs me up, so the treatments really help open me up.
We have some friends who have loaned us a recliner that we set up in our front room, and this is bed at night for now. I still cannot lie flat as I feel a pressure on my chest and heart and it makes it harder to breathe. But this chair is very comfortable and is working very well for me. The pulmonary specialist says that this whole process will possibly take up to two to three months before it may be healed, so this is a long road ahead. I think I am getting stronger each day, and probably will not need the oxygen for that entire amount of time, but will stay on the steroids and many other drugs they are finding necessary.
I see the cardiologist on Wednesday for an update on my heart and on the medications she has placed me on, then Matt and I will go to UCSF on Thursday to meet with the oncologists. That will be the first time we will havae spoken to them since my hospital stay, although my other doctors have been in contact with them somewhat. We have a lot of questions to ask and pieces to try and place together.
I want you to know just how overwhelmed and blessed Matt and I and our kids have felt by all of your help and encouraging words. Many of you have sent cards, stopped by with meals or treats, called to check up on what you could help with, and many came to see me or called at the hospital. We are blessed. Matt's parents have been here regularly, as has my RN nurse sister-in-law, who would not leave until she was sure we knew what we were up against and how to check my insulin, give the shots (Matt practiced on an orange!), and had meals for my new diet under control. God has blessed us with her training, her merciful heart, and her availablity. It is very hard to be beholden to others, even family, but God is working on my heart in this area. Please know how thankful we are for each of you, and that we treasure and lean on your prayers.
Danene and Family
January17, 2010
Tuesday, January 12, 2010
From The Hospital Room
Dear Friends and Family,
It’s been quite awhile since I last blogged, as I look back on the last entry. Since then, Matt and I have been to UCSF to meet with Dr. Ryan and to go over blood tests and the results of my scans. The scans showed that the meds are working to contain the cancer as there was no additional growth on any of the nodules in my lungs, and the soft mass in my lower abdomen is showing signs of being necrotic (dying). This is wonderful news!
The day after we got back from that appointment, I had the day off of work, and found myself unable to breathe deeply if I moved around at all. I spent most of the day in the recliner, and finally called Matt, who suggested I call the cardiologist. They immediately suggested I go to the ER, so my good friend Kimberley dropped everything and drove me there where Matt eventually met us. My pulmonary pressure is twice what it should be, which is a large cause of my breathlessness. They did another echocardiogram and gave me a deep breathing treatment. I was admitted to the hospital and met with a pulmonary specialist, who gave me a bronchioscopy the Thursday morning, which meant he went in through my nose into my lungs, cleaned out the gook, and took several biopsies of the spider-webby areas at the base of my lung lobes. He thought this went very well with little bleeding. I am having deep breathing treatments every 6 hours, which are really helping my ability to breathe more deeply and to control my breathing without panting as much. The next morning the specialist stopped by and he had called the lab for a preliminary path report and the biopsies showed NO CANCER! They are just a form of broncialitis or an inflammation of the lungs. So they are treating it with large doses of steroids that they are already gradually tapering off. The side effects of the steroids affect my blood sugar, so I have it checked four times a day, and have a small dose of insulin each time depending on the level of the sugar. (I think of you often, Kent.) I’m still here at Lodi Memorial, and will probably be here for a few more days until they get things stabilized a little more and have a better plan of attack for when I go home. The steroids will need to continue for up to three months, as well as breathing treatments and oxygen, so there will still be a long road to travel when I finally get home, with lots of unknowns for now. I have taken a week by week leave from school for now, until I know the long term of what I am up against. Each day is a little different, some going very well, and some filled with fear and anxiety. I am learning to turn to the Bible, to cry out to Jesus, and to lose myself in worship music on my iPod during those moments. God has delivered me many a time from the brink of despair. I find myself missing my children, who are not allowed to visit me. My sister-in-law, in her infinite wisdom and deeply caring heart, bought journals for the kids and me so we can write letters back and forth to each other. This has turned out to be a fun and creative way to stay in touch and be as real as possible with each other.
I realize I have rambled a lot with this blog, but this is where I am for now in this journey with cancer. It has taken some turns that were unexpected, but I am getting the help I need. And in the midst of it all is some good news that the cancer is somewhat under control. We are surrounded by caring and helpful family and friends that have completely overwhelmed us with their help and desire to step in and do anything at all. We have had people pick up and deliver kids, bring meals, clean house, drop off baked goods, and just call with words of encouragement and wisdom. And we are thankful. We are thankful for all of your prayers, and ask that they continue. Pray in whatever way the Lord lays on your heart. We will keep you updated as we can and as we know more.
Danene and Matt and Kids
It’s been quite awhile since I last blogged, as I look back on the last entry. Since then, Matt and I have been to UCSF to meet with Dr. Ryan and to go over blood tests and the results of my scans. The scans showed that the meds are working to contain the cancer as there was no additional growth on any of the nodules in my lungs, and the soft mass in my lower abdomen is showing signs of being necrotic (dying). This is wonderful news!
The day after we got back from that appointment, I had the day off of work, and found myself unable to breathe deeply if I moved around at all. I spent most of the day in the recliner, and finally called Matt, who suggested I call the cardiologist. They immediately suggested I go to the ER, so my good friend Kimberley dropped everything and drove me there where Matt eventually met us. My pulmonary pressure is twice what it should be, which is a large cause of my breathlessness. They did another echocardiogram and gave me a deep breathing treatment. I was admitted to the hospital and met with a pulmonary specialist, who gave me a bronchioscopy the Thursday morning, which meant he went in through my nose into my lungs, cleaned out the gook, and took several biopsies of the spider-webby areas at the base of my lung lobes. He thought this went very well with little bleeding. I am having deep breathing treatments every 6 hours, which are really helping my ability to breathe more deeply and to control my breathing without panting as much. The next morning the specialist stopped by and he had called the lab for a preliminary path report and the biopsies showed NO CANCER! They are just a form of broncialitis or an inflammation of the lungs. So they are treating it with large doses of steroids that they are already gradually tapering off. The side effects of the steroids affect my blood sugar, so I have it checked four times a day, and have a small dose of insulin each time depending on the level of the sugar. (I think of you often, Kent.) I’m still here at Lodi Memorial, and will probably be here for a few more days until they get things stabilized a little more and have a better plan of attack for when I go home. The steroids will need to continue for up to three months, as well as breathing treatments and oxygen, so there will still be a long road to travel when I finally get home, with lots of unknowns for now. I have taken a week by week leave from school for now, until I know the long term of what I am up against. Each day is a little different, some going very well, and some filled with fear and anxiety. I am learning to turn to the Bible, to cry out to Jesus, and to lose myself in worship music on my iPod during those moments. God has delivered me many a time from the brink of despair. I find myself missing my children, who are not allowed to visit me. My sister-in-law, in her infinite wisdom and deeply caring heart, bought journals for the kids and me so we can write letters back and forth to each other. This has turned out to be a fun and creative way to stay in touch and be as real as possible with each other.
I realize I have rambled a lot with this blog, but this is where I am for now in this journey with cancer. It has taken some turns that were unexpected, but I am getting the help I need. And in the midst of it all is some good news that the cancer is somewhat under control. We are surrounded by caring and helpful family and friends that have completely overwhelmed us with their help and desire to step in and do anything at all. We have had people pick up and deliver kids, bring meals, clean house, drop off baked goods, and just call with words of encouragement and wisdom. And we are thankful. We are thankful for all of your prayers, and ask that they continue. Pray in whatever way the Lord lays on your heart. We will keep you updated as we can and as we know more.
Danene and Matt and Kids
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