The past few days have been filled with ups and downs. The doctors have finally zoned in on what pain meds work for Cassandra. She has been doing better overall. Yesterday she opened her eyes and started talking again. Some of the talking is about things she needs to do like laundry or cleaning. Other times she says things like pass the parmesan cheese. Most of what she says you can understand and is relevant to what is happening. She tells us that she loves us, worries about Elliot or what he is doing. She has been getting long periods of sleep, waking up afterwards says "I haven't slept that long in a very long time." She has been eating pudding and ice chips along with drinking orange juice.
She is still in pain and they are giving her a lot of pain meds to control it. Last night they had to give her meds to sedate her because she wanted to get out of bed all night long. The doctor was amazed at how much it took to finally get her to sleep. I talked with the doctor this morning and asked if she was getting better. The doctor said no, but anything is possible. The doctor was quick to point out that she is young and that is why we are seeing her talk, sit up and drink fluids.
The doctor is certain that she will remain in hospice and wont be going home. I know what she says is probably true but I do have a little hope in the gains she has made over 2 days. I know that all of this could be over in a matter of hours and every minute we have with her is a gift but I still have hope. Her cancer has done crazy stuff before like the first remission she had.
There is only one thing I am certain of, Cassandra is fighting to the very end and anyone that knows her wouldn't expect anything different.
Eric
August 31, 2014
August 29, 2014
Update
Yesterday was a tough day. Cassandra woke up and was feeling pretty good. Her pain was at the lowest it had been for weeks. By 9 am pain started to come back. I tried to give her increased meds early to fight it off but by 10 am we had admitted her to the hospice facility.
The doctors spent most of the day trying to get her pain under control. Around 5 pm they finally got her to sleep for a couple of hours. She really didn't get much sleep until 3:30 this morning. She has been asleep now for about 8 hours.
When she is awake she yells out in pain. She really doesn't know where she is or what doctors or nurses are doing. She fights with the staff because of her pain levels and doesn't want to be touched. We talked with the doctor this morning and it was indicated to us that the cancer is now progressing all over her brain. This is causing the increased pressure and severe pain. They are trying to reduce swelling with steroids but the doctor told us this seems like the final stages. He is pretty certain this will not turn around at this point and she wont be returning home.
Please continue your thoughts and prayers.
Eric
The doctors spent most of the day trying to get her pain under control. Around 5 pm they finally got her to sleep for a couple of hours. She really didn't get much sleep until 3:30 this morning. She has been asleep now for about 8 hours.
When she is awake she yells out in pain. She really doesn't know where she is or what doctors or nurses are doing. She fights with the staff because of her pain levels and doesn't want to be touched. We talked with the doctor this morning and it was indicated to us that the cancer is now progressing all over her brain. This is causing the increased pressure and severe pain. They are trying to reduce swelling with steroids but the doctor told us this seems like the final stages. He is pretty certain this will not turn around at this point and she wont be returning home.
Please continue your thoughts and prayers.
Eric
August 28, 2014
Admitted
This post is being updated by her dad. Her challenge continues, it has been a few rough days. Sleep is short, more like naps through the day and night. Eric is trying to keep the meds enough to control the pain but still allow her to function. The pain just continues to come back it seems stronger and last longer before the meds can get it under control. She is having all the symptoms expected for a person with brain tumors. She gave us a real scare Tuesday morning about 2:30am when she had a seizure, hard to breathe, face and arms numb, speech was bad, but it passed leaving lots of pain to get under control.
Admission to the Hospice care center just happened 2 hours ago, they want to get the pain under control instead of the spikes she has been having. We don't know if this will be a short stay or not at this time. The doctor will review her condition early this afternoon, then we hope to know more.
I can tell you that for the last few days when the pain is being controlled that she is not one to sit, she is up doing something or playing with Elliot.
Eric is being the great husband he is.
Sorry this is not the good writing you are used to reading from her telling her story. We asked that you continue to lift her up in your prayers.
Admission to the Hospice care center just happened 2 hours ago, they want to get the pain under control instead of the spikes she has been having. We don't know if this will be a short stay or not at this time. The doctor will review her condition early this afternoon, then we hope to know more.
I can tell you that for the last few days when the pain is being controlled that she is not one to sit, she is up doing something or playing with Elliot.
Eric is being the great husband he is.
Sorry this is not the good writing you are used to reading from her telling her story. We asked that you continue to lift her up in your prayers.
August 20, 2014
Update
Every day is a challenge. I struggle to communicate. I see hallucinations. I have a lot of pain most days. I don't really sleep at night. To cope with all this and to help with my anxiety, I clean. Lots of cleaning. I try to do small activities to keep my mind off things. Cleaning allows me to do small things that help me feel productive and like I accomplished something during the day. Since I am on steroids, I have been trying to workout more and more since they are the meds that put me in a wheelchair last time. The steroids rob muscle strength from my arms and legs. They also interrupt my sleep cycle.
We saw the hospice nurse recently and she increased my morphine that I am on. She told me that brain tumors are notorious for the pain they cause. Its something I am going to have to deal with for the rest of my life, however long that is. She also told us the timeline we are looking at. "Weeks, not months" is her estimate. She bases this on the fact that only a few weeks ago I was in relative good health. Then the cancer came roaring back. Anything could happen between now and weeks from now. Everyone's cancer is different. The things I have on my side are my age and that my cancer has done odd things in the past. In the past, I have had tumors grow then stop suddenly. There is a chance that what is going on in my brain could do that now but the odds are of course against us.
No matter what is happening tumor wise I am experiencing something that we really never thought we would have to deal with. My oncologist told us a long time ago that when we got whole brain radiation treatment that this would cause problems for me a year to two years in the future. At the time, we said we would do anything to make it that long. Now that we are here, I am having cognitive slow down. The basics of it are the increased confusion after my brain has been battling cancer for 2 years. At the time we really didn't have a choice, I was given less than 30 days and here I am today. It seems like it was the right thing to do.
Eric and I are going to try to post more often. Right now our lives are spent trying to enjoy each day and play with our little boy. We have been enjoying the simple things like playing with Elliot's new Hot Wheels cars. Elliot loves them and takes them with him everywhere he goes.
I want to thank everyone that has donated to our website www.gofundme.com/cassvscancer . We are completely blown away by the amount donated. We really can't thank you all enough for the support we have received. If there is something positive to come from all of this, it has made us very aware of our friends and family and how much we love them all. We also can't help but see all the people that don't even know us but are helping us. Words can't describe how thankful we are to all of you.
August 13, 2014
Back on Hospice
Today we got to meet my hospice nurse again. It was bitter sweet. We like our hospice nurse but nobody really wants to have to know one. If you do have to know one, ours is the one to get. She is very understanding about the situation and works really hard to get my pain in check.
For those out there who are curious as to the whole process of getting on hospice care its pretty simple. Your doctor decides there is nothing else he can do and makes a phone call to a hospice care facility. They usually call you the same day and set up a same day meeting to get you admitted. A nurse comes and explains that "this is hospice, we don't cure you, we make you comfortable". There is nothing quite like signing a do not resuscitate order in front of your mother and husband. Of course, I am lucky enough that this is my second time signing one. Most people only get to sign one. The first one I signed was ceremoniously destroyed by Eric and I when my tumors began to shrink. I hope we get the same opportunity to do it again.
We talked at length today with my nurse about what is happening. My headaches are worse, my arms are going numb for long periods of time more often and sometimes just can't speak at all. Slurring my words or just not being able to find words. It is very frustrating. There are times when I can forget about the cancer like last night. Eric's parents and brother came over as well as my mom to enjoy some dinner. I was amazed at how well I felt. For about an hour I almost felt normal. When they left I went to bed and my arms immediately went numb which brought me right back to reality.
Our hospice nurse thinks that I am having some form of seizures and that is causing my speech difficulty. She also said that the problems will only get worse. The disease in my brain is going to progress and nothing can really stop it. To say that I am scarred would be the understatement of the year. We have fought this thing for 2 years now and I feel like it may have the upper hand now.
It has become very difficult to continue typing on this blog because of my reading and speech problems. For the past few posts Eric has had to transcribe and help me decide what it is I am trying to say. My thoughts are not always clear enough to get my point across. We decided that I will continue to have him transcribe my posts until it becomes to much. Eric will then take over the blog to keep everyone up to date on what is going on.
For now, that is all I have. I don't mean to end the post on a downer but sometimes, when you are talking about something like this, its the only way you can end it.
For those out there who are curious as to the whole process of getting on hospice care its pretty simple. Your doctor decides there is nothing else he can do and makes a phone call to a hospice care facility. They usually call you the same day and set up a same day meeting to get you admitted. A nurse comes and explains that "this is hospice, we don't cure you, we make you comfortable". There is nothing quite like signing a do not resuscitate order in front of your mother and husband. Of course, I am lucky enough that this is my second time signing one. Most people only get to sign one. The first one I signed was ceremoniously destroyed by Eric and I when my tumors began to shrink. I hope we get the same opportunity to do it again.
We talked at length today with my nurse about what is happening. My headaches are worse, my arms are going numb for long periods of time more often and sometimes just can't speak at all. Slurring my words or just not being able to find words. It is very frustrating. There are times when I can forget about the cancer like last night. Eric's parents and brother came over as well as my mom to enjoy some dinner. I was amazed at how well I felt. For about an hour I almost felt normal. When they left I went to bed and my arms immediately went numb which brought me right back to reality.
Our hospice nurse thinks that I am having some form of seizures and that is causing my speech difficulty. She also said that the problems will only get worse. The disease in my brain is going to progress and nothing can really stop it. To say that I am scarred would be the understatement of the year. We have fought this thing for 2 years now and I feel like it may have the upper hand now.
It has become very difficult to continue typing on this blog because of my reading and speech problems. For the past few posts Eric has had to transcribe and help me decide what it is I am trying to say. My thoughts are not always clear enough to get my point across. We decided that I will continue to have him transcribe my posts until it becomes to much. Eric will then take over the blog to keep everyone up to date on what is going on.
For now, that is all I have. I don't mean to end the post on a downer but sometimes, when you are talking about something like this, its the only way you can end it.
August 9, 2014
Some Good News...
We got the information back on my newest set of scans. There is no evidence of cancer below my neck. While that is good news it really doesn't matter now that it is growing again in my brain. Currently, my doctor has his research team looking for any clinical trial that could help. The problem is that when you have cancer in the brain there aren't that many trials available. Most cancer trials want some big tumors in the body to easily see if their drugs are working. Once its in your brain it is usually to late at that point to do anything. The other problem I have is that it is in the lining of my brain. There are even fewer trials for that. My hope for any trial is dwindling which means that when I see the doctor again on Tuesday, I will most likely hear the words hospice again.
The good news on that is that we would receive the same hospice nurse we did last time and we liked her. She also lives close by to us.
As for how I'm feeling lately, horrible. I wake up in the morning with massive headaches that rival the headache I received when my first tumor burst 2 years ago. Eric has to keep me thoroughly drugged to even have a normal day and I am back on steroids to reduce the swelling in my brain. I am always in pain no matter what drugs I take but usually I can get it down to a manageable level. There are times that the only thing I can do is lay in bed and cry because the drugs aren't working fast enough or its just a really bad headache.
If the headaches weren't bad enough, I am also having trouble reading and speaking. Sometimes I cant get the right words out when talking. I can't end sentences and can't answer questions sometimes. My reading has also been getting worse. While my reading was never great after the first tumor I was managing to get better. Eric has been pushing me to read more books even though it takes me a long time to read one page or even read a children book to Elliot. Now my reading is almost impossible.
I want to thank everyone for the words of support in comments or private messages to me. Some of you have asked if we had a donation site. We finally decided to set one up after the many requests to want to help. We appreciate everyone's support. You can find it at www.gofundme.com/cassvscancer
The good news on that is that we would receive the same hospice nurse we did last time and we liked her. She also lives close by to us.
As for how I'm feeling lately, horrible. I wake up in the morning with massive headaches that rival the headache I received when my first tumor burst 2 years ago. Eric has to keep me thoroughly drugged to even have a normal day and I am back on steroids to reduce the swelling in my brain. I am always in pain no matter what drugs I take but usually I can get it down to a manageable level. There are times that the only thing I can do is lay in bed and cry because the drugs aren't working fast enough or its just a really bad headache.
If the headaches weren't bad enough, I am also having trouble reading and speaking. Sometimes I cant get the right words out when talking. I can't end sentences and can't answer questions sometimes. My reading has also been getting worse. While my reading was never great after the first tumor I was managing to get better. Eric has been pushing me to read more books even though it takes me a long time to read one page or even read a children book to Elliot. Now my reading is almost impossible.
I want to thank everyone for the words of support in comments or private messages to me. Some of you have asked if we had a donation site. We finally decided to set one up after the many requests to want to help. We appreciate everyone's support. You can find it at www.gofundme.com/cassvscancer
August 5, 2014
My fight continues
Things you don't want to hear on your wedding anniversary: There are signs of cancer back. We will likely put you on hospice by the end of the week.
The mind splitting headaches are right where the cancer is. They out me on steroids to try to help the pain. I will have more scans on friday. Meanwhile, the research/ trial team is looking to see if there are any new drug trials I might qualify for. Ultimately, if there isn't a trial found I get to welcome my favorite hospice back.
Thats all I have in me to write at this time. Honestly they have me on pain drugs Im a bit loopy. Its the only thing right now that helps dull my head. (it sorta feels like having your head explode over and over). I will keep everyone updated as we continue on our journey.
The mind splitting headaches are right where the cancer is. They out me on steroids to try to help the pain. I will have more scans on friday. Meanwhile, the research/ trial team is looking to see if there are any new drug trials I might qualify for. Ultimately, if there isn't a trial found I get to welcome my favorite hospice back.
Thats all I have in me to write at this time. Honestly they have me on pain drugs Im a bit loopy. Its the only thing right now that helps dull my head. (it sorta feels like having your head explode over and over). I will keep everyone updated as we continue on our journey.
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