Dave's brother, Don, wrote this poem for Dave and my mom. As this is mom and Dave's 8 year wedding anniversary, it seemed appropriate to publish it here. Thank you Don for this beautiful gift.
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Forever
by Don Rath Jr.
I remember you telling me once
That life turns on a dime
That if I did nothing at all
I should love all the time.
Today I learned the truth of that
Certain as it can be
How it’s you and me forever
For all the world to see.
In my life I’ve known of sorrow
The pain of loss in life
It is sadness and the tears
I weep for the loss of my wife.
In my darkest hour I shall pray
Even into the night
When they have all gone home
With you my life is right.
So in love is where I will stay
In my heart, in my head
Forever I’ll hold on
Reliving the day we wed.
Forever and ever
that is where we live
Down deep inside our heart
It’s only the love that we give.
Never ever to part
Forever and ever I
will hold you near
The warmth of your heart.
The life that we have lived
Right from the very start
Forever yes forever I will love you
Forever yes forever I will love you
Forever oh yes forever I will always love you
Forever always forever my love.
Copyright © 2008 Don Rath Jr.
Friday, May 30, 2008
Thursday, May 29, 2008
Dear Mom
Dear Mom,
A few nights before you passed away, I had a dream about Grandpa and he told me that I shouldn’t worry about your cancer; that you were going to be okay. At the time, I thought he was telling me that you were going to be okay because you were going to get better, but in hindsight, I realize that he was telling me that you were going to be okay because he was going to be there for you. For very selfish reasons, I really wish the first had been true. But since that is not how this turned out, I do feel a bit better knowing that you are with your dad. Now that you have passed away, I understand how badly you missed him after he died.
Last night at your visitation, I realized how many lives you touched with your kindness and your friendship. I realized that you were the person who wove the strings of so many relationships. Now that you are gone, who is going to keep us all connected? Pam Rhode and I were talking about this last night and when I got home last night she had emailed me and said that she nominated me as the person from our Minneapolis neighborhood to do that, but honestly mom, I wouldn’t even know how to start that task. It takes years and years, along with purposeful intent to keep relationships together like that.
When I tell people about our old neighborhood, I tell them to imagine those days when neighbors got together on the front step or on the porch to drink coffee or iced tea, where the moms all hung out and exchanged stories and laughed with one another while the kids played together in the yard. When on hot evenings, before everyone had air-conditioning, that cooling down wasn’t about the temperature but about how we ended the day with each other. Those days are some of the best memories of my childhood, and without you, I never would have had that experience. It was you and Karen Rhode who brought us together all of those evenings.
Sarah Macklin was also here last night, and she told me that every year you have written personalized notes in every Christmas card you sent her for the last twenty years, and that each Christmas she looked forward to getting that card to know how we were all doing. Mom, I had no idea you were doing that. Sarah and I had been best friends when we lived in Lakeville, and even though I got too busy, you held a thread there for the family. Last night when she was here, I realized that because of the relationship you sustained, that my best friend from high school was still my friend. I don’t even know how to begin to thank you.
It also reminded me that a few years ago, I missed a family function because I had to work, and you very bluntly told me that my priorities were messed up. You told me that work was just that; work, but that it was family and friends who mattered. At the time, I was slightly insulted. I heard you, but until now, I didn’t get it. These last few weeks, however, have shown me what you meant. It is family and friends that make the rest of what we do worthwhile.
These last few months, while you were sick, you told me that I had to make sure that Ann, Craig and I didn’t let anything push us apart. You told me that I had to make sure that Ann knew she was loved by all of us and to make sure that Craig didn’t work himself to death. I remember telling you that I would do my best, but that you didn’t need to worry about that because you would be here. Now, I think that you knew what was going to happen even then.
In some ways, I wonder if you knew even before you found out you had cancer. It would explain why, in the last few years, you systematically cataloged every photo you had ever taken into a series of albums that would make any historian envious. It would also explain why, for the last few years, you found each and every living thing valuable, well, except for box-elder bugs, they were definitely the exception. But your garden and yard have become sanctuaries for birds, deer, and even an albino squirrel. It’s a good thing Dave has a green thumb like you do, because as you know, if it weren’t for you the plants in my house would have dried up a long time ago. Of course, now that I am nearly 40, I have actually learned how to see the signs of a plant that needs water.
Mom, it’s so hard to imagine life without you in it everyday. You’ve taught me so much about living life, about family, and about priorities; it’s not going to be the same without you to call everyday. Can you talk to God about getting email addresses in heaven?
I really don’t know how to end this letter to you. I am not ready to say goodbye.
I love you Mom, and I miss you so much. I hope you know how important you have been and still are to me. I’ll do my best to make you proud and to carry on the traditions you have created in our lives. I won’t be able to do it like you did, but I’ll do what I can.
Leisa
A few nights before you passed away, I had a dream about Grandpa and he told me that I shouldn’t worry about your cancer; that you were going to be okay. At the time, I thought he was telling me that you were going to be okay because you were going to get better, but in hindsight, I realize that he was telling me that you were going to be okay because he was going to be there for you. For very selfish reasons, I really wish the first had been true. But since that is not how this turned out, I do feel a bit better knowing that you are with your dad. Now that you have passed away, I understand how badly you missed him after he died.
Last night at your visitation, I realized how many lives you touched with your kindness and your friendship. I realized that you were the person who wove the strings of so many relationships. Now that you are gone, who is going to keep us all connected? Pam Rhode and I were talking about this last night and when I got home last night she had emailed me and said that she nominated me as the person from our Minneapolis neighborhood to do that, but honestly mom, I wouldn’t even know how to start that task. It takes years and years, along with purposeful intent to keep relationships together like that.
When I tell people about our old neighborhood, I tell them to imagine those days when neighbors got together on the front step or on the porch to drink coffee or iced tea, where the moms all hung out and exchanged stories and laughed with one another while the kids played together in the yard. When on hot evenings, before everyone had air-conditioning, that cooling down wasn’t about the temperature but about how we ended the day with each other. Those days are some of the best memories of my childhood, and without you, I never would have had that experience. It was you and Karen Rhode who brought us together all of those evenings.
Sarah Macklin was also here last night, and she told me that every year you have written personalized notes in every Christmas card you sent her for the last twenty years, and that each Christmas she looked forward to getting that card to know how we were all doing. Mom, I had no idea you were doing that. Sarah and I had been best friends when we lived in Lakeville, and even though I got too busy, you held a thread there for the family. Last night when she was here, I realized that because of the relationship you sustained, that my best friend from high school was still my friend. I don’t even know how to begin to thank you.
It also reminded me that a few years ago, I missed a family function because I had to work, and you very bluntly told me that my priorities were messed up. You told me that work was just that; work, but that it was family and friends who mattered. At the time, I was slightly insulted. I heard you, but until now, I didn’t get it. These last few weeks, however, have shown me what you meant. It is family and friends that make the rest of what we do worthwhile.
These last few months, while you were sick, you told me that I had to make sure that Ann, Craig and I didn’t let anything push us apart. You told me that I had to make sure that Ann knew she was loved by all of us and to make sure that Craig didn’t work himself to death. I remember telling you that I would do my best, but that you didn’t need to worry about that because you would be here. Now, I think that you knew what was going to happen even then.
In some ways, I wonder if you knew even before you found out you had cancer. It would explain why, in the last few years, you systematically cataloged every photo you had ever taken into a series of albums that would make any historian envious. It would also explain why, for the last few years, you found each and every living thing valuable, well, except for box-elder bugs, they were definitely the exception. But your garden and yard have become sanctuaries for birds, deer, and even an albino squirrel. It’s a good thing Dave has a green thumb like you do, because as you know, if it weren’t for you the plants in my house would have dried up a long time ago. Of course, now that I am nearly 40, I have actually learned how to see the signs of a plant that needs water.
Mom, it’s so hard to imagine life without you in it everyday. You’ve taught me so much about living life, about family, and about priorities; it’s not going to be the same without you to call everyday. Can you talk to God about getting email addresses in heaven?
I really don’t know how to end this letter to you. I am not ready to say goodbye.
I love you Mom, and I miss you so much. I hope you know how important you have been and still are to me. I’ll do my best to make you proud and to carry on the traditions you have created in our lives. I won’t be able to do it like you did, but I’ll do what I can.
Leisa
Tuesday, May 27, 2008
Obituary
Marilynne Claire Martin Rath, age 60, of Lakeville passed away on Sunday, May 25, 2008 after a 3 month long battle with ovarian cancer. Marilynne was born on August 31, 1947 in Minneapolis. She attended Minneapolis public schools and graduated from Washburn High School in 1965. Marilynne moved to Lakeville in 1979 with her family. She retired from Northwest Airlines three years ago, where she worked for 21 years. Marilynne married her husband David Rath on May 30, 2000 in Kauai, Hawaii. She is a beloved wife, mother, and grandmother and will be greatly missed by her family and friends.
She was preceded in death by her parents, Ed and Margaret Martin, her brother, Dave Martin, and her sister, Linda Martin.
She is survived by her husband, David Rath of Lakeville, her children, Leisa Irwin of Northfield, Ann (Ralph) Harris of Hudson, WI, Craig Pfeifer of Elko; her step children, Brandi Davies of Lakeville, Tamika (Jake) Hiniker of Hastings; and her grandchildren, Cody and Matthew Irwin (children of Leisa), Brookelle and Breylyn Bolf-Harris, Adrianna, Addisyn, and Avaree Harris (children of Ann), Kara and Michael Kapp and Ben Hinicker (children of Tamika), and Maya and Sydney Davies (children of Brandi).
Interment will be Lakewood Cemetery, Mpls, with a luncheon to follow at church. Funeral Service 11 AM, Thursday, May 29th at the Edina Morningside Community Church, 4201 Morningside Road, Edina, MN 55416, with visitation 1 hour before service at church and Wednesday, 5-8 PM Washburn-McReavy Edina Chapel, 50th and Hwy 100, 952-920-3996.
She was preceded in death by her parents, Ed and Margaret Martin, her brother, Dave Martin, and her sister, Linda Martin.
She is survived by her husband, David Rath of Lakeville, her children, Leisa Irwin of Northfield, Ann (Ralph) Harris of Hudson, WI, Craig Pfeifer of Elko; her step children, Brandi Davies of Lakeville, Tamika (Jake) Hiniker of Hastings; and her grandchildren, Cody and Matthew Irwin (children of Leisa), Brookelle and Breylyn Bolf-Harris, Adrianna, Addisyn, and Avaree Harris (children of Ann), Kara and Michael Kapp and Ben Hinicker (children of Tamika), and Maya and Sydney Davies (children of Brandi).
Interment will be Lakewood Cemetery, Mpls, with a luncheon to follow at church. Funeral Service 11 AM, Thursday, May 29th at the Edina Morningside Community Church, 4201 Morningside Road, Edina, MN 55416, with visitation 1 hour before service at church and Wednesday, 5-8 PM Washburn-McReavy Edina Chapel, 50th and Hwy 100, 952-920-3996.
Memorial Donations can be made to:
American Cancer Society
P.O. Box 22718
Oklahoma City, OK 73123-1718
1-800-ACS-2345
Monday, May 26, 2008
In Celebration of Marilynne's Life
My mom passed away on Sunday evening at about 3:50 pm.
In the end, she decided it was time to let go. I am so proud of her for all of her strength and courage these past few months. She will be missed more than she can ever possibly imagine. But I know that she is in a better place and that she is with us in spirit forever.
There will be a visitation/wake at Washburn-McReavy Edina Chapel 952-920-3996 West 50th St. & Hwy 100 on Wednesday, May 28th from 5 - 8 pm.
Services will be held at 11:00 am on Thursday at a location, yet to be determined. (I will update this notice tomorrow morning once we have confirmation of tne church.)
Burial will be at Lakewood Cemetery around noon.
There will be a reception at the church following the burial, at approximately 1:00.
You can check this blog for updates, or call Washburn-McReavy Edina Chapel.
If you work with me, please feel free to contact Jaci or Damara for schedules or directions. They will have updates, as well as my schedule, and the best way to reach me in these next few days.
Thank you again for all the support you have given to my mom and my family in these last few months. Your thoughts and prayers carried us through many, many rough days.
In the end, she decided it was time to let go. I am so proud of her for all of her strength and courage these past few months. She will be missed more than she can ever possibly imagine. But I know that she is in a better place and that she is with us in spirit forever.
There will be a visitation/wake at Washburn-McReavy Edina Chapel 952-920-3996 West 50th St. & Hwy 100 on Wednesday, May 28th from 5 - 8 pm.
Services will be held at 11:00 am on Thursday at a location, yet to be determined. (I will update this notice tomorrow morning once we have confirmation of tne church.)
Burial will be at Lakewood Cemetery around noon.
There will be a reception at the church following the burial, at approximately 1:00.
You can check this blog for updates, or call Washburn-McReavy Edina Chapel.
If you work with me, please feel free to contact Jaci or Damara for schedules or directions. They will have updates, as well as my schedule, and the best way to reach me in these next few days.
Thank you again for all the support you have given to my mom and my family in these last few months. Your thoughts and prayers carried us through many, many rough days.
Saturday, May 24, 2008
Mom is in ICU
Mom was moved to ICU today.
They believe she has a perferated bowel and septia/septis.
We've agreed that further treatment will only prolong the inevitable as the doctors have all said there is no chance of recovery.
We have transitioned care to provide only pain management and anti-nausea.
I am writing this from the conference room in the 3rd floor, which the hospital staff have turned into our family waiting room. All the grandkids are here, along with my dad, my step dad, my step mom, my sister, and my brother in-law. My brother is on his way from up North. He should be here within an hour now.
A miracle would be much appreciated, but we are also prepared that we may not get one.
They believe she has a perferated bowel and septia/septis.
We've agreed that further treatment will only prolong the inevitable as the doctors have all said there is no chance of recovery.
We have transitioned care to provide only pain management and anti-nausea.
I am writing this from the conference room in the 3rd floor, which the hospital staff have turned into our family waiting room. All the grandkids are here, along with my dad, my step dad, my step mom, my sister, and my brother in-law. My brother is on his way from up North. He should be here within an hour now.
A miracle would be much appreciated, but we are also prepared that we may not get one.
Thursday, May 22, 2008
Wednesday - May 21st, 2008
Dave stays at the hospital until noon and then Lena comes in. Twice a week, Lena will stay until 10 pm, make sure mom gets her Ativan around 9:30 (which will help her sleep) and gets her pain med around 10:00. Then Lena will go, mom will be alone - hopefully asleep, until Dave gets there around 12:45 am. Other nights, Lena will leave around 6 or 7 pm when I arrive after work. I think we'll be able to keep this to about 40 hours per week for Lena, and Dave and I can cover the rest.
Wednesday, I was at a client's when the hospital number showed up on my caller id on my cell phone. I answered it, and found that mom was calling me to tell me that she was done with this shit. (her words, not mine.) I was to come to the hospital immediately and take her home. I have to say that I am getting very good at not freaking out about these calls anymore. If I were here, I'd be angry too; I'd want to go home too; I'd want things back to how they were a few month ago. I do want them back to how they were.
I told her I'd be over as soon as my meeting was over, but that it might be awhile. I knew Lena was in the room and wasn't worried that mom would try to "escape" before I got there.
I called Dave and learned that mom had been very upset this morning. She had misunderstood the doctor, and in response refused medical treatment... no pain meds, no ativan, nothing. I found out that he had talked to her about putting in a PEG to help keep her from vomitting all the time. She got very upset about this conversation. And even after Dave left for work, and Lena was there, she was very agitated and angry.
On my way to the hospital with Damara (she'd been at the meeting with me, and hence was about to make an unplanned detour with me,) I called mom. She was upset about bizarre things. Dave hasn't been to see her in weeks... uhmmm, okay. And he was going to steal all of her money... uhmmm, what money? And how could he leave her alone like this... yeah, okay mom, men suck (we've had this conversation many times... and no, I don't believe that, but there wasn't any point in having a discussion about it right now.) It was the "men suck" comment that led us to the path of how much she hated her doctor. She thought he had told her that she was going to die. (Maybe he did.) And she thought he wanted to put the tube back in her nose. Actually, he wants to put in a PEG (a tube that goes into her abdomen through her side to drain her stomach since her intestines are not fully functioning). But she only heard part of what he had said, and she was really, really upset by what she thought she heard.
I talked to her for the entire drive, and by the time I was in Edina, she was calming down. I told her I wouldn't let Dave steal her money (not that he ever would, but it was what mom needed to hear). I told her that I wouldn't let Dr. Boente put another tube in her nose. I told her that Lena would help me beat up all the men who were messing with her if they didn't stop (she actually laughed when I said that.) And I told her that I would bring her a fillet of fish with lettuce and tomato from McDonald's. She loves McDonald's fillet of fish...
When we got to the room, she was still angry, but not as bad as she had been. I checked her med listing right away, and sure enough, she hadn't had any Ativan since 1 am the night before. When I asked about this, the nurse told me that she had refused any meds in the morning, and that on subsequent visits to check on how she was, mom never said she needed Ativan, she just said she felt "weird." Yeah, weird is how you might feel if you had cancer, anxiety issues, pain, and didn't get your meds.
And so, it seems we are on a roller coaster ride. I am not a fan of roller coasters anyway, but this one is really awful. I feel like I didn't have a choice about getting on, I can't see when the hills, dips and curves are coming, and I don't know how to get off. All I can so is try to minimize how I feel when we go around the curves and up and down the hills.
Wednesday, I was at a client's when the hospital number showed up on my caller id on my cell phone. I answered it, and found that mom was calling me to tell me that she was done with this shit. (her words, not mine.) I was to come to the hospital immediately and take her home. I have to say that I am getting very good at not freaking out about these calls anymore. If I were here, I'd be angry too; I'd want to go home too; I'd want things back to how they were a few month ago. I do want them back to how they were.
I told her I'd be over as soon as my meeting was over, but that it might be awhile. I knew Lena was in the room and wasn't worried that mom would try to "escape" before I got there.
I called Dave and learned that mom had been very upset this morning. She had misunderstood the doctor, and in response refused medical treatment... no pain meds, no ativan, nothing. I found out that he had talked to her about putting in a PEG to help keep her from vomitting all the time. She got very upset about this conversation. And even after Dave left for work, and Lena was there, she was very agitated and angry.
On my way to the hospital with Damara (she'd been at the meeting with me, and hence was about to make an unplanned detour with me,) I called mom. She was upset about bizarre things. Dave hasn't been to see her in weeks... uhmmm, okay. And he was going to steal all of her money... uhmmm, what money? And how could he leave her alone like this... yeah, okay mom, men suck (we've had this conversation many times... and no, I don't believe that, but there wasn't any point in having a discussion about it right now.) It was the "men suck" comment that led us to the path of how much she hated her doctor. She thought he had told her that she was going to die. (Maybe he did.) And she thought he wanted to put the tube back in her nose. Actually, he wants to put in a PEG (a tube that goes into her abdomen through her side to drain her stomach since her intestines are not fully functioning). But she only heard part of what he had said, and she was really, really upset by what she thought she heard.
I talked to her for the entire drive, and by the time I was in Edina, she was calming down. I told her I wouldn't let Dave steal her money (not that he ever would, but it was what mom needed to hear). I told her that I wouldn't let Dr. Boente put another tube in her nose. I told her that Lena would help me beat up all the men who were messing with her if they didn't stop (she actually laughed when I said that.) And I told her that I would bring her a fillet of fish with lettuce and tomato from McDonald's. She loves McDonald's fillet of fish...
When we got to the room, she was still angry, but not as bad as she had been. I checked her med listing right away, and sure enough, she hadn't had any Ativan since 1 am the night before. When I asked about this, the nurse told me that she had refused any meds in the morning, and that on subsequent visits to check on how she was, mom never said she needed Ativan, she just said she felt "weird." Yeah, weird is how you might feel if you had cancer, anxiety issues, pain, and didn't get your meds.
And so, it seems we are on a roller coaster ride. I am not a fan of roller coasters anyway, but this one is really awful. I feel like I didn't have a choice about getting on, I can't see when the hills, dips and curves are coming, and I don't know how to get off. All I can so is try to minimize how I feel when we go around the curves and up and down the hills.
Wednesday, May 21, 2008
Seriously, is this what we get from hospitals?
Tuesday - Dave and I were still doing the rotating shift thing with Mom. I am beyond tired. I woke up in the morning to get my kids ready for school and could barely keep my eyes open. I made it home last night (this morning) around 2 am. This morning, I sat on the couch and literally just ordered them around until it was time to go.... (Thank you Damara for driving them in, I don't think I would have made it.) I know they understand, but... well its really all about guilt these days. Guilt for not being able to do more for my mom, guilt for not being able to spend more time with my kids, guilt for asking Damara to pick up so much of the slack with our clients... Yes, I am riddled with guilt these days.
I was working this morning when Dave called me to tell me that Mom had a really rough morning. She woke up around 8:15 am because she had to go to the bathroom. Bathroom trips these days are a nightmare. She can't get herself out of bed, and so she has to depend on others to help her, but she doesn't always remember this, and there are times when she doesn't even know she needs to push the call button. This is how she missed her pain meds on Sunday too. She has no concept of time; thinks it is morning when it is night, thinks months have passed when its only been days.
And so, this morning she had to go to the bathroom. She has a bed alarm on her bed, so if she gets up, it goes off, and people are supposed to come running. She doesn't have the strength to stand, and if she gets up she is going to fall. Dave was in the room but asleep. The alarm woke him up and he stopped her from getting up, but she was frantic about going to the bathroom. Dave pushed the call button for her, but as we have learned, the call button does not really mean anyone will be coming soon. After a few minutes with mom saying she had to go NOW.... Dave went into the hallway to call for a nurse. He was no sooner out of the room, then mom tried to get up. She wasn't successful. She fell, and with the fall, the tube in her nose (NG) going into her stomach was yanked out. (The tube was connected to a drainage unit on the wall, and therefore, the pressure from the fall pulled it out.) In addition, she hurt her back, her knees, and her arm.
Dave rushed back in to help her, but she was hysterical and he wasn't able to get her up on his own. He called for a nurse, but again, got no response. When he went back into the hallway, frantic himself, by this time, the first nurse he saw told him that she was busy with another patient and walked away. The next person he saw was a doctor, who came right in to help. The doctor apologized profusely, said this never should have happened. This is where I start to get a little angry... how many times are we going to hear "that never should have happened" or "we're so sorry?" It just seems like too many things go wrong, even when we are here, we can't get mom the help she needs.
After Dave told me the whole saga, I felt ill. I was already exhausted from lack of sleep and stress, and now my mom is suffering needlessly because nobody knows how to keep her safe and comfortable while she is in the hospital. That hardly seems right.
I was supposed to have two board meetings today, one at 3:30 in Blaine, and one at 6:30 in Plymouth, but I knew that I couldn't leave mom alone. Dave had to go to work too, and he has already taken so much time off, that he is worried that he is going to be fired, and he needs to keep his job because he needs the health insurance for mom.
My initial reaction was to find someone who could stay with mom when Dave and I could not be there. I have a friend who owns a home health care/personal care attendent company and I called him to see if it was possible to get a PCA for mom in the hospital. He said he had the perfect person, and that she could start that same day. We agreed to meet at the hospital at 4 pm.
After I arranged for the PCA, I called our family lawyer and explained all of the issues we were having and asked how she felt I should handle them. She called me back a few minutes later to tell me that she had found the patient services advocate at the hospital and that I should call her and tell her what was going on.
After talking with her for a few minutes, I told her that I had hired a PCA who was starting later that day. She told me that I couldn't do that. To which I said, you can't stop me... for all you know she is a friend of the family who is going to be staying with my mom when Dave and I can't be there. She said, "she isn't going to be able to give her meds or make any health care decisions for her... and the hospital isn't going to pay for it." I told her that it was the nurses job to give meds, that the PCA was just going to be there to make sure mom didn't fall out of bed, miss her meds, or have any other unneccessary complications or injuries. She agreed that it was up to the family if we wanted to make arrangements for a PCA. She also promised to talk to the nursing supervisor about the issues we were having and see if they couldn't improve upon the care.
And so, we now have Lena. (Thank you Prosper.) Lena is wonderful. She started at 4 pm. I made it to my 6:30 board meeting and was back to the hospital around 9 pm. Lena stayed until midnight with me so that she and I could go through the health history, the meds, the expectations, etc.
I know its not the perfect scenario, and quite honestly, its a huge financial committment, but I have to say that I feel a LOT better knowing that mom isn't alone when Dave and I are working.
I was working this morning when Dave called me to tell me that Mom had a really rough morning. She woke up around 8:15 am because she had to go to the bathroom. Bathroom trips these days are a nightmare. She can't get herself out of bed, and so she has to depend on others to help her, but she doesn't always remember this, and there are times when she doesn't even know she needs to push the call button. This is how she missed her pain meds on Sunday too. She has no concept of time; thinks it is morning when it is night, thinks months have passed when its only been days.
And so, this morning she had to go to the bathroom. She has a bed alarm on her bed, so if she gets up, it goes off, and people are supposed to come running. She doesn't have the strength to stand, and if she gets up she is going to fall. Dave was in the room but asleep. The alarm woke him up and he stopped her from getting up, but she was frantic about going to the bathroom. Dave pushed the call button for her, but as we have learned, the call button does not really mean anyone will be coming soon. After a few minutes with mom saying she had to go NOW.... Dave went into the hallway to call for a nurse. He was no sooner out of the room, then mom tried to get up. She wasn't successful. She fell, and with the fall, the tube in her nose (NG) going into her stomach was yanked out. (The tube was connected to a drainage unit on the wall, and therefore, the pressure from the fall pulled it out.) In addition, she hurt her back, her knees, and her arm.
Dave rushed back in to help her, but she was hysterical and he wasn't able to get her up on his own. He called for a nurse, but again, got no response. When he went back into the hallway, frantic himself, by this time, the first nurse he saw told him that she was busy with another patient and walked away. The next person he saw was a doctor, who came right in to help. The doctor apologized profusely, said this never should have happened. This is where I start to get a little angry... how many times are we going to hear "that never should have happened" or "we're so sorry?" It just seems like too many things go wrong, even when we are here, we can't get mom the help she needs.
After Dave told me the whole saga, I felt ill. I was already exhausted from lack of sleep and stress, and now my mom is suffering needlessly because nobody knows how to keep her safe and comfortable while she is in the hospital. That hardly seems right.
I was supposed to have two board meetings today, one at 3:30 in Blaine, and one at 6:30 in Plymouth, but I knew that I couldn't leave mom alone. Dave had to go to work too, and he has already taken so much time off, that he is worried that he is going to be fired, and he needs to keep his job because he needs the health insurance for mom.
My initial reaction was to find someone who could stay with mom when Dave and I could not be there. I have a friend who owns a home health care/personal care attendent company and I called him to see if it was possible to get a PCA for mom in the hospital. He said he had the perfect person, and that she could start that same day. We agreed to meet at the hospital at 4 pm.
After I arranged for the PCA, I called our family lawyer and explained all of the issues we were having and asked how she felt I should handle them. She called me back a few minutes later to tell me that she had found the patient services advocate at the hospital and that I should call her and tell her what was going on.
After talking with her for a few minutes, I told her that I had hired a PCA who was starting later that day. She told me that I couldn't do that. To which I said, you can't stop me... for all you know she is a friend of the family who is going to be staying with my mom when Dave and I can't be there. She said, "she isn't going to be able to give her meds or make any health care decisions for her... and the hospital isn't going to pay for it." I told her that it was the nurses job to give meds, that the PCA was just going to be there to make sure mom didn't fall out of bed, miss her meds, or have any other unneccessary complications or injuries. She agreed that it was up to the family if we wanted to make arrangements for a PCA. She also promised to talk to the nursing supervisor about the issues we were having and see if they couldn't improve upon the care.
And so, we now have Lena. (Thank you Prosper.) Lena is wonderful. She started at 4 pm. I made it to my 6:30 board meeting and was back to the hospital around 9 pm. Lena stayed until midnight with me so that she and I could go through the health history, the meds, the expectations, etc.
I know its not the perfect scenario, and quite honestly, its a huge financial committment, but I have to say that I feel a LOT better knowing that mom isn't alone when Dave and I are working.
Monday, May 19, 2008
Contradictory Information...
It's been another long day.... for different reasons than I wrote about yesterday.
Dave and I are trying to make sure that someone is here 24 hours a day... It makes for some very long days and eventually, I don't think it is possible for the two of us to do this alone. Ugh!
We met with Dr. Boente at 12:30 today. Mom was awake when he was here, although she wasn't always sure what was going on.
Dr. Boente said that Dr. Savage was wrong about her x-ray. While mom does have constricted bowels from the many, many tumors - some as small as the size of a pin head, and layered deep upon each other. He told us that the type of cancer that she has is Platinum-Refractory Ovarian Cancer, one of the most complicated and aggressive types of ovarian cancer. He said that research has shown that a surgery on her bowels will likely not solve the problem. He said that he beleives that the intestines are not completely blocked - hence the term constricted, and therefore, we might see some improvement after having had the NG (Nasal Gastro-something or other) in for the last two days.
I told him that I was concerned that it appeared that she was doing worse since the tube had been put in and the Ativan had been increased. I asked if we could try decreasing the Ativan, at least during the day, to see if she might be a bit more aware of what is going on around her. He also said that if she could get some movement in her bowels, that we might be able to take the tube out in the next few days.
And so, they clamped the tube at 2:45 today. She went until 6:00 pm without it. She did feel slightly nauseaus, but not as bad as other days without the tube. We turned it on again for about 25 minutes when she was feeling sick, but then turned it back off again at 6:25. Its been off ever since and it is now 12:30 am.
We also cut back on the Ativan, going down to .5 mg from her normal 1.0 mg. She is still getting her Dilaudid every 2-3 hours, but she has been relatively comfortable most of the day and evening. She was even awake while Margaret visited tonight and watched Dancing with the Stars. She didn't always make sense when she was talking (mom, not Margaret), but it was really great to have her awake for so long.
She seems to think that the tube in her nose is a chemo treatment and that it should be time for it to come out. She really does hate the tube. If I were her, I'd want it out too.
And so, the plan has changed again. And we are just taking it one day at time, with the priority being 1) keeping her comfortable and 2) getting her strength back.
Dave just got here for our shift change, so I am heading out the door. I'll update more later.
Note to self: update blog about DNR/DNI order mess up over weekend.
Dave and I are trying to make sure that someone is here 24 hours a day... It makes for some very long days and eventually, I don't think it is possible for the two of us to do this alone. Ugh!
We met with Dr. Boente at 12:30 today. Mom was awake when he was here, although she wasn't always sure what was going on.
Dr. Boente said that Dr. Savage was wrong about her x-ray. While mom does have constricted bowels from the many, many tumors - some as small as the size of a pin head, and layered deep upon each other. He told us that the type of cancer that she has is Platinum-Refractory Ovarian Cancer, one of the most complicated and aggressive types of ovarian cancer. He said that research has shown that a surgery on her bowels will likely not solve the problem. He said that he beleives that the intestines are not completely blocked - hence the term constricted, and therefore, we might see some improvement after having had the NG (Nasal Gastro-something or other) in for the last two days.
I told him that I was concerned that it appeared that she was doing worse since the tube had been put in and the Ativan had been increased. I asked if we could try decreasing the Ativan, at least during the day, to see if she might be a bit more aware of what is going on around her. He also said that if she could get some movement in her bowels, that we might be able to take the tube out in the next few days.
And so, they clamped the tube at 2:45 today. She went until 6:00 pm without it. She did feel slightly nauseaus, but not as bad as other days without the tube. We turned it on again for about 25 minutes when she was feeling sick, but then turned it back off again at 6:25. Its been off ever since and it is now 12:30 am.
We also cut back on the Ativan, going down to .5 mg from her normal 1.0 mg. She is still getting her Dilaudid every 2-3 hours, but she has been relatively comfortable most of the day and evening. She was even awake while Margaret visited tonight and watched Dancing with the Stars. She didn't always make sense when she was talking (mom, not Margaret), but it was really great to have her awake for so long.
She seems to think that the tube in her nose is a chemo treatment and that it should be time for it to come out. She really does hate the tube. If I were her, I'd want it out too.
And so, the plan has changed again. And we are just taking it one day at time, with the priority being 1) keeping her comfortable and 2) getting her strength back.
Dave just got here for our shift change, so I am heading out the door. I'll update more later.
Note to self: update blog about DNR/DNI order mess up over weekend.
Sunday, May 18, 2008
Sunday, May 18, 2008
I am typing this as I sit next to mom's bed in the hospital. She is resting, which is a good thing.
I am trying to formulate what I think I should say about the last few days events, but know that no matter what I manage to type, its not really going to explain it.
Today for example... I drove here after getting a call from Dave at 1:30 this afternoon. He had been called by the hospital at 4 am because mom was "flipping out." I don't know how else to describe what he told me. I had stayed until after 11:00 last night. He had left about 10:00. When I left mom was resting, after a horrendous day. And so at 4 am he gets up and drives back to the hospital. When he had left last night she had been awake, but relatively comfortable. Between 11 pm and 4 am, apparently all hell broke lose. Mom wanted the tube out of her nose which is draining her stomach. The tube was put in at about 9 pm after learning at earlier in the day that her bowels were obstructed by tumors... And so Dave had been called back to the hospital at 4 am. He left at 1:00 to head home to sleep. And now it was 1:30 in the afternoon and once again, he was getting a call that mom was flipping out.
See this is where it gets complicated. There is somuch information, I can barely keep it all straight. But short of writing a book here, I am going to try to summarize some of the major events. (all times are approximate)
Tuesday - May 13 - 4 pm: she was admitted.
Tuesday - May 13 - 6 pm: x-rays/ct scans indicated no blockage, but lots of tumors.
Tuesday - May 13 - evening: Mom is not happy to be back in the hospital, but understands why she is here.
Tuesday - Wednesday 13/14 - overnight: Mom's meds were not ordered accurately and they did not get her Ativan. By morning she is a hysterical wreck.
Wednesday - May 14 - 7 am: Mom calls all of us from the hospital, one right after another multiple times. She is sobbing into the phone, "help me, help me." At some points during these calls she is in so much agony that it sounds like she is in being murdered as she holds the phone. I can't even begin to tell you how hard this was to hear.
Wednesday - May 14 - 8 am: Dave comes to the hospital and helps get her meds situated. This takes several hours.
Wednesday - May 14 - 2 pm: I come to the hospital. Mom basically slept the whole time, but when she did wake up she was in a lot of pain and nauseaus the whole time.
Wednesday - May 14 - 5:30 pm: Dr. Boente arrives and tells Dave and I that she is not responding to the chemo - I posted another blog after this meeting (below).
Thursday - May 15 - noon: We had a meeting scheduled with Dr. Boente at noon. Mom was in a lot of pain and had been vomitting for hours and most of the night before. I had to leave at 1:35, and when I left, Dr. Boente had not yet arrived.
Thursday - May 15 - 1:45 pm: Apparently Dr. Boente arrived. I missed him by less than 10 minutes. He was not optimistic and wanted to know how the family wanted to proceed. Dave was told that mom was not strong enough to handle any additional chemo. She would have to start eating on her own again if she was going to have a chance to fight this thing. He did order a "BAD" drip which is Benadryl, Ativan, and D_____ to help with the nausea. This had helped a lot the last time she was in here.
Friday - May 16 - I did not visit, but I did talk to mom on the phone. She sounded better than she had since she had been in the hospital. She still hadn't eaten but the vomitting had subsided. Dave had been there in the morning, but had went to work at 2:30.
Saturday - May 17 - 3 pm: Dave called and requested that we all come to the hospital for a 7 pm meeting. Dr. Savage had been in and there were new test results we needed to discuss. I told him that he had best just tell me on the phone, I wasn't going to be able to drive an hour while my mind was spinning around the potential scenarios. Dave told me that Dr. Savage (a partner/associate of Dr. Boente) had been in and said that in review of the x-rays, they had found that both her upper and lower intestines were blocked due to increased tumor growth. The doctor said that there were several options, but that he could not guarantee that any would help. Dave said that mom wanted to have a family meeting to discuss the options.
Saturday May 17 - 7 pm: We all met in mom's room (Ann, Ralph, Craig, Dave, me, and mom) and talked about the options. Based on the information we had at that time, we agreed that it made sense for mom to have surgery to try to remove the obstruction. Its possible that she will have a coloscopy bag after surgery, and depending on whether there is enough of her intestines left after the surgery she may or may not have one forever. We also agreed that we should have her moved to Mayo. We have been discussing this on and off every time she has ended up in the hospital. And even though we have made the bed to bed transfer plans before, Dr. Boente has convinced us to keep on this path. We met with the nurse in charge tonight too, and she explained the problems with the intestinal blockage. She also said that we should talk to Dr. Boente about the options for treatment and the transfer. Short term we agreed that she needed to have a tube run to her stomach through her nose (there is a name for this, I don't know what it is though) to pump out the fluid that is being produced so that she'll be sick less and not have as much heartburn.
Saturday May 17 - 9 pm: Mom was very brave when they put the tube in. I seriously don't think I could have done it. Ann and I literally held her hands down so that she wouldn't pull it out once it was half-way in. She was a wreck afterwards... shaking for an hour before she calmed down again.
And so, now we are back to where I started this thing.
Dave spent many hours at the hospital this morning trying to get mom stable again. According to the nurses, soon after he left, she got agitated again, so agitated that she called 911 to have them come and get her out of the hospital. She said she was going to divorce Dave and that she was going to have the nurses arrested for torturing her.
When I got here today she was still furious. She said that she had been abandoned, that no one had been to see her in weeks. She said she had been tricked into having this tube put down her throat and that it had to come out immediately. She told me she was going to divorce my father, that she wasn't going to stay married to Gene after this... (I didn't dare tell her that she and my father divorced over 25 years ago... and that her husbands name is Dave) She said she wanted to die. She wasn't going to live like this.
It took us until about 5 pm to get her settled back down. She has been sleeping since except when she woke up at 7 with pain again. From the time I turned on the light to get the nurse, from the time the meds were finally distributed, an hour had passed. By then mom was shaking and crying again from the pain.
Since she has fallen asleep, I had the nurse go over her history of pain meds today and it looks like it has been a mess all day. She was getting meds regularly until the 7 am switch of nurses. She got pain meds again at 9 am, and then not again until 4 pm. Once the pain meds wear off, it takes a long time to get things stable again. She should have had pain meds every two hours. Its not okay to have her waiting 7 hours for meds when she needs them every 2 hours. I have hung a chart on the wall with her two primary pain meds listed and the times listed down the side of the page, so that we can monitor it ourselves when we are here. In addition to the pain meds getting messed up we also learned just today that she is NOT supposed to be eating when she has this tube in. And yet, they haven't made any other plans to get her food. The nurses and nursing assistants have been encouraging her to eat. But with the tube in, every time she eats, she vomits, which, with the tube in her throat and nose is awful for her. I am seriously struggling what what I see as a lack of care being provided by a hospital whose job it is to provide care. Dave and I are trying to rotate shifts so that she isn't alone during the times when the hospital is short staffed. I feel like we don't have any options if we want to make sure that mom is cared for and comfortable.
Tomorrow morning, we are going to call to try to schedule a time with Dr. Boente when we can all be here again. We are hoping for one of two short term outcomes:
1) Move mom to Mayo and then have the surgery done there.
2) Do the surgery and then move mom to Mayo.
I have been working on writing this for the last 5 hours, and I know that it is disjointed and a lot of information. I'll try to review it and correct it later. For now, I am going to get going. Dave is on his way and I want to make sure we can get him a cot in here before I leave.
I am trying to formulate what I think I should say about the last few days events, but know that no matter what I manage to type, its not really going to explain it.
Today for example... I drove here after getting a call from Dave at 1:30 this afternoon. He had been called by the hospital at 4 am because mom was "flipping out." I don't know how else to describe what he told me. I had stayed until after 11:00 last night. He had left about 10:00. When I left mom was resting, after a horrendous day. And so at 4 am he gets up and drives back to the hospital. When he had left last night she had been awake, but relatively comfortable. Between 11 pm and 4 am, apparently all hell broke lose. Mom wanted the tube out of her nose which is draining her stomach. The tube was put in at about 9 pm after learning at earlier in the day that her bowels were obstructed by tumors... And so Dave had been called back to the hospital at 4 am. He left at 1:00 to head home to sleep. And now it was 1:30 in the afternoon and once again, he was getting a call that mom was flipping out.
See this is where it gets complicated. There is somuch information, I can barely keep it all straight. But short of writing a book here, I am going to try to summarize some of the major events. (all times are approximate)
Tuesday - May 13 - 4 pm: she was admitted.
Tuesday - May 13 - 6 pm: x-rays/ct scans indicated no blockage, but lots of tumors.
Tuesday - May 13 - evening: Mom is not happy to be back in the hospital, but understands why she is here.
Tuesday - Wednesday 13/14 - overnight: Mom's meds were not ordered accurately and they did not get her Ativan. By morning she is a hysterical wreck.
Wednesday - May 14 - 7 am: Mom calls all of us from the hospital, one right after another multiple times. She is sobbing into the phone, "help me, help me." At some points during these calls she is in so much agony that it sounds like she is in being murdered as she holds the phone. I can't even begin to tell you how hard this was to hear.
Wednesday - May 14 - 8 am: Dave comes to the hospital and helps get her meds situated. This takes several hours.
Wednesday - May 14 - 2 pm: I come to the hospital. Mom basically slept the whole time, but when she did wake up she was in a lot of pain and nauseaus the whole time.
Wednesday - May 14 - 5:30 pm: Dr. Boente arrives and tells Dave and I that she is not responding to the chemo - I posted another blog after this meeting (below).
Thursday - May 15 - noon: We had a meeting scheduled with Dr. Boente at noon. Mom was in a lot of pain and had been vomitting for hours and most of the night before. I had to leave at 1:35, and when I left, Dr. Boente had not yet arrived.
Thursday - May 15 - 1:45 pm: Apparently Dr. Boente arrived. I missed him by less than 10 minutes. He was not optimistic and wanted to know how the family wanted to proceed. Dave was told that mom was not strong enough to handle any additional chemo. She would have to start eating on her own again if she was going to have a chance to fight this thing. He did order a "BAD" drip which is Benadryl, Ativan, and D_____ to help with the nausea. This had helped a lot the last time she was in here.
Friday - May 16 - I did not visit, but I did talk to mom on the phone. She sounded better than she had since she had been in the hospital. She still hadn't eaten but the vomitting had subsided. Dave had been there in the morning, but had went to work at 2:30.
Saturday - May 17 - 3 pm: Dave called and requested that we all come to the hospital for a 7 pm meeting. Dr. Savage had been in and there were new test results we needed to discuss. I told him that he had best just tell me on the phone, I wasn't going to be able to drive an hour while my mind was spinning around the potential scenarios. Dave told me that Dr. Savage (a partner/associate of Dr. Boente) had been in and said that in review of the x-rays, they had found that both her upper and lower intestines were blocked due to increased tumor growth. The doctor said that there were several options, but that he could not guarantee that any would help. Dave said that mom wanted to have a family meeting to discuss the options.
Saturday May 17 - 7 pm: We all met in mom's room (Ann, Ralph, Craig, Dave, me, and mom) and talked about the options. Based on the information we had at that time, we agreed that it made sense for mom to have surgery to try to remove the obstruction. Its possible that she will have a coloscopy bag after surgery, and depending on whether there is enough of her intestines left after the surgery she may or may not have one forever. We also agreed that we should have her moved to Mayo. We have been discussing this on and off every time she has ended up in the hospital. And even though we have made the bed to bed transfer plans before, Dr. Boente has convinced us to keep on this path. We met with the nurse in charge tonight too, and she explained the problems with the intestinal blockage. She also said that we should talk to Dr. Boente about the options for treatment and the transfer. Short term we agreed that she needed to have a tube run to her stomach through her nose (there is a name for this, I don't know what it is though) to pump out the fluid that is being produced so that she'll be sick less and not have as much heartburn.
Saturday May 17 - 9 pm: Mom was very brave when they put the tube in. I seriously don't think I could have done it. Ann and I literally held her hands down so that she wouldn't pull it out once it was half-way in. She was a wreck afterwards... shaking for an hour before she calmed down again.
And so, now we are back to where I started this thing.
Dave spent many hours at the hospital this morning trying to get mom stable again. According to the nurses, soon after he left, she got agitated again, so agitated that she called 911 to have them come and get her out of the hospital. She said she was going to divorce Dave and that she was going to have the nurses arrested for torturing her.
When I got here today she was still furious. She said that she had been abandoned, that no one had been to see her in weeks. She said she had been tricked into having this tube put down her throat and that it had to come out immediately. She told me she was going to divorce my father, that she wasn't going to stay married to Gene after this... (I didn't dare tell her that she and my father divorced over 25 years ago... and that her husbands name is Dave) She said she wanted to die. She wasn't going to live like this.
It took us until about 5 pm to get her settled back down. She has been sleeping since except when she woke up at 7 with pain again. From the time I turned on the light to get the nurse, from the time the meds were finally distributed, an hour had passed. By then mom was shaking and crying again from the pain.
Since she has fallen asleep, I had the nurse go over her history of pain meds today and it looks like it has been a mess all day. She was getting meds regularly until the 7 am switch of nurses. She got pain meds again at 9 am, and then not again until 4 pm. Once the pain meds wear off, it takes a long time to get things stable again. She should have had pain meds every two hours. Its not okay to have her waiting 7 hours for meds when she needs them every 2 hours. I have hung a chart on the wall with her two primary pain meds listed and the times listed down the side of the page, so that we can monitor it ourselves when we are here. In addition to the pain meds getting messed up we also learned just today that she is NOT supposed to be eating when she has this tube in. And yet, they haven't made any other plans to get her food. The nurses and nursing assistants have been encouraging her to eat. But with the tube in, every time she eats, she vomits, which, with the tube in her throat and nose is awful for her. I am seriously struggling what what I see as a lack of care being provided by a hospital whose job it is to provide care. Dave and I are trying to rotate shifts so that she isn't alone during the times when the hospital is short staffed. I feel like we don't have any options if we want to make sure that mom is cared for and comfortable.
Tomorrow morning, we are going to call to try to schedule a time with Dr. Boente when we can all be here again. We are hoping for one of two short term outcomes:
1) Move mom to Mayo and then have the surgery done there.
2) Do the surgery and then move mom to Mayo.
I have been working on writing this for the last 5 hours, and I know that it is disjointed and a lot of information. I'll try to review it and correct it later. For now, I am going to get going. Dave is on his way and I want to make sure we can get him a cot in here before I leave.
Wednesday, May 14, 2008
Depressing
Mom is back in the hospital again.
She went to ER on Tuesday and was admitted. The symptoms which led us there included, disorientation, lethargy, weakness... mom fell twice in two days trying to get to the bathroom. She wasn't eating or drinking and on Monday wasn't able (perhaps not willing) to take her meds. She thought Dave was trying to kill her and refused any help at all from anyone until she was literally laying on the floor sobbing from pain and unable to get back up. Dave was at work while this was going on; Craig was visiting her and at his wits end. He called me around 5 pm and I went up there, but by then he had her back in bed and she was willing to take her pain meds again, so things had calmed down a bit. It was a very late night and very exhausting for all involved.
And so, Tuesday morning Dave called MOHPA to see about getting mom in for a blood test to see if her kidneys were shutting down again. He ended up having to leave a message. By 1:30 he still hadn't heard back from anyone and so I put on my "queen bitch" hat and called the clinic myself. When I was told that it would be best to leave a message and someone would get back to me, I said, "no, it would be best if I just wait for someone to take my call..." When someone came back on five minutes later and said that all of the nurses were still with patients and that I needed to leave a message and someone would call me back, I simply explained that mom was a patient too, and that we needed to find out where the doctor wanted us to take her (clinic or ER) because we needed to know if her kidneys were shutting down again, and we weren't willing to take the risk of waiting too long if there was a problem again. A nurse came to the phone. I repeated the whole thing, gave all the history, and she put me back on hold while she contacted mom's doctor. And so, ultimately we were told that we should go to ER. The doctor called ahead, which helped a lot. We were really hoping that they would see mom in ER, run some tests, and send her home again. Obviously, that is not how it went.
This morning they ran more tests. A CT scan. An x-ray. And a ca 125 test (blood test). The CT scan showed little change from the last one. The x-ray was fine. But the ca 125 showed extremeley high levels of cancer cells, a significant increase from the last test.
Dr. Boente met with us at 5:30 tonight. The results indicate that the chemo is not working. While the tumors do not appear to be any larger, the ca 125 results mean that the cancer is spreading. He said that the chemo they have been using is 75-80% effective in treating most people. But that mom is in the 20-25% who don't respond to the treatment. He said that there was one other type of chemo we could try, but we can't do that for a few more weeks because her body is so beat up from the first three rounds of chemo, that she can't sustain another round at this time.
He also said that we need to decide if trying more chemo is the course of action we want to take. He was not optimistic that it would help at all. He said our other option is to up the pain meds and make her as comfortable as we can. The problem with increase meds is that it will make it even harder to get her to eat, and she is barely eating now.
I asked if we could do both... increase the pain meds and do chemo. And he said that he must not be explaining himself very well. He never did come out and say it, but when he left, Dave and I both had the same impression. She is going to die. The question is how its going to happen...will it be the cancer, or the chemo, that will do it? Dr. Boente said he was sorry several times. He said he knew this was very hard.
I wasn't really sure he expected us to give any kind of answer, and yet, eventually we need to answer. I told him that tonight, we just had to get rid of the pain. She can't tolerate it, and she shouldn't have to. I keep thinking that if we can get the pain in control, then at least she'll have a chance of wanting to keep up the fight. But with the pain, she can't do anything.
Dave left the room for awhile, and mom asked me, "This is it, isn't it?"
I am not willing to hear it and I told her the same thing I told the doctor. Lets get the pain under control and then we can see where we are at. She nodded, but I didn't get the impression that she agreed with me, just that she wasn't going to argue with me.
Later on she told me that she could see Joe and Earl. I said, "who?" She said, "Joe and Earl, they live behind us."
Joe and Earl were twins we knew when we lived on 34th Avenue in South Minneapolis. Our backyard butted up against their backyard. They were my age. We moved to Lakeville in 1979 and didn't stay in contact with them.
Later, with her eyes closed, and in just a whisper, she started talking about her mom in the present tense... talking about visiting her. My grandmother, mom's mom, died years ago.
Dave said that before I got there today, mom was talking about all of the angels that she was seeing.
I probably don't need to say how hard this is. Each of us is trying so hard to hang on to the belief that she is giong to be okay, and each of us wants so badly for mom to be well, but we are also completely freaked out that this might really be a path to the end. And none of us is ready for that.... except maybe mom.
She went to ER on Tuesday and was admitted. The symptoms which led us there included, disorientation, lethargy, weakness... mom fell twice in two days trying to get to the bathroom. She wasn't eating or drinking and on Monday wasn't able (perhaps not willing) to take her meds. She thought Dave was trying to kill her and refused any help at all from anyone until she was literally laying on the floor sobbing from pain and unable to get back up. Dave was at work while this was going on; Craig was visiting her and at his wits end. He called me around 5 pm and I went up there, but by then he had her back in bed and she was willing to take her pain meds again, so things had calmed down a bit. It was a very late night and very exhausting for all involved.
And so, Tuesday morning Dave called MOHPA to see about getting mom in for a blood test to see if her kidneys were shutting down again. He ended up having to leave a message. By 1:30 he still hadn't heard back from anyone and so I put on my "queen bitch" hat and called the clinic myself. When I was told that it would be best to leave a message and someone would get back to me, I said, "no, it would be best if I just wait for someone to take my call..." When someone came back on five minutes later and said that all of the nurses were still with patients and that I needed to leave a message and someone would call me back, I simply explained that mom was a patient too, and that we needed to find out where the doctor wanted us to take her (clinic or ER) because we needed to know if her kidneys were shutting down again, and we weren't willing to take the risk of waiting too long if there was a problem again. A nurse came to the phone. I repeated the whole thing, gave all the history, and she put me back on hold while she contacted mom's doctor. And so, ultimately we were told that we should go to ER. The doctor called ahead, which helped a lot. We were really hoping that they would see mom in ER, run some tests, and send her home again. Obviously, that is not how it went.
This morning they ran more tests. A CT scan. An x-ray. And a ca 125 test (blood test). The CT scan showed little change from the last one. The x-ray was fine. But the ca 125 showed extremeley high levels of cancer cells, a significant increase from the last test.
Dr. Boente met with us at 5:30 tonight. The results indicate that the chemo is not working. While the tumors do not appear to be any larger, the ca 125 results mean that the cancer is spreading. He said that the chemo they have been using is 75-80% effective in treating most people. But that mom is in the 20-25% who don't respond to the treatment. He said that there was one other type of chemo we could try, but we can't do that for a few more weeks because her body is so beat up from the first three rounds of chemo, that she can't sustain another round at this time.
He also said that we need to decide if trying more chemo is the course of action we want to take. He was not optimistic that it would help at all. He said our other option is to up the pain meds and make her as comfortable as we can. The problem with increase meds is that it will make it even harder to get her to eat, and she is barely eating now.
I asked if we could do both... increase the pain meds and do chemo. And he said that he must not be explaining himself very well. He never did come out and say it, but when he left, Dave and I both had the same impression. She is going to die. The question is how its going to happen...will it be the cancer, or the chemo, that will do it? Dr. Boente said he was sorry several times. He said he knew this was very hard.
I wasn't really sure he expected us to give any kind of answer, and yet, eventually we need to answer. I told him that tonight, we just had to get rid of the pain. She can't tolerate it, and she shouldn't have to. I keep thinking that if we can get the pain in control, then at least she'll have a chance of wanting to keep up the fight. But with the pain, she can't do anything.
Dave left the room for awhile, and mom asked me, "This is it, isn't it?"
I am not willing to hear it and I told her the same thing I told the doctor. Lets get the pain under control and then we can see where we are at. She nodded, but I didn't get the impression that she agreed with me, just that she wasn't going to argue with me.
Later on she told me that she could see Joe and Earl. I said, "who?" She said, "Joe and Earl, they live behind us."
Joe and Earl were twins we knew when we lived on 34th Avenue in South Minneapolis. Our backyard butted up against their backyard. They were my age. We moved to Lakeville in 1979 and didn't stay in contact with them.
Later, with her eyes closed, and in just a whisper, she started talking about her mom in the present tense... talking about visiting her. My grandmother, mom's mom, died years ago.
Dave said that before I got there today, mom was talking about all of the angels that she was seeing.
I probably don't need to say how hard this is. Each of us is trying so hard to hang on to the belief that she is giong to be okay, and each of us wants so badly for mom to be well, but we are also completely freaked out that this might really be a path to the end. And none of us is ready for that.... except maybe mom.
Thursday, April 17, 2008
The doctor is in...
Mom is feeling a bit better. She is still in the hospital. Her doctor had been on vacation and finally came back Tuesday evening. He was surprised that she had pneumonia and that no one (the doctors filling in for him) had given her an anti-nausea medication via IV. He also said that the notes that were taken on her chart over the last week or so were not thorough, and therefore, even when he was calling in and the nurses were reading the chart to him over the phone, no one told him that she had pneumonia or that she was so sick. Mom is glad he is back and feels like there is finally a plan for her care.
Prior to him returning, we had started to make plans for her to move to Mayo, but now that he is here she wants to wait out this week and see how it goes.
On Monday we had been told (by a different doctor) that they were putting off the chemo until she was better. But Dr. Boente said that he was going to schedule the chemo for Friday or Saturday anyway. He said that this dose of chemo does would not lower her white blood cell count, and so, with the anti-biotic she would still be able to fight off the pneumonia. Then she'll have 3 more weeks till the next round which will effect her white blood cell count, but hopefully she'll be over the pneumonia by then.
Prior to him returning, we had started to make plans for her to move to Mayo, but now that he is here she wants to wait out this week and see how it goes.
On Monday we had been told (by a different doctor) that they were putting off the chemo until she was better. But Dr. Boente said that he was going to schedule the chemo for Friday or Saturday anyway. He said that this dose of chemo does would not lower her white blood cell count, and so, with the anti-biotic she would still be able to fight off the pneumonia. Then she'll have 3 more weeks till the next round which will effect her white blood cell count, but hopefully she'll be over the pneumonia by then.
Sunday, April 13, 2008
Pneumonia
Well, she looked a lot better yesterday, but she looked like hell today.
Last night she had a fever, so the nurse called a doctor in to make sure she was okay. Well he tried to help her sit up, which led to a coughing and gagging fit, which led to a chest x-ray, which then led to the diagnosis of pneumonia.
She is on antibiotics again, but not feeling very well.
Last night she had a fever, so the nurse called a doctor in to make sure she was okay. Well he tried to help her sit up, which led to a coughing and gagging fit, which led to a chest x-ray, which then led to the diagnosis of pneumonia.
She is on antibiotics again, but not feeling very well.
Still in the hospital
Mom is still in the hospital, but looking a lot better. She was up and walking around yesterday which is a huge improvement over earlier this week. Her kidneys seem to be working to some extent, and the levels that they check - not sure what they are for - but they are coming down, not normal yet, but much better than they were. She is much more lucid than she was earlier this week, which also helps.
The doctors are still not sure where the pain is stemming from, we have been told that this is abnormal, but then, so is everything else that has been happening with mom's cancer.
If she continues to improve like she has been, she may be out of the hospital early next week. She has chemo scheduled again for this coming Friday. We are hoping that she will be well enough to go.
The doctors are still not sure where the pain is stemming from, we have been told that this is abnormal, but then, so is everything else that has been happening with mom's cancer.
If she continues to improve like she has been, she may be out of the hospital early next week. She has chemo scheduled again for this coming Friday. We are hoping that she will be well enough to go.
Wednesday, April 9, 2008
Resting
Mom is sleeping - and still at the hospital.
She was seen by several doctors and they have changed her medications. Apparently some of the meds she was taking were working against her kidneys.
Still no decision on whether or not to do dialysis.
She was seen by several doctors and they have changed her medications. Apparently some of the meds she was taking were working against her kidneys.
Still no decision on whether or not to do dialysis.
Still Delirious
I just got off the phone with mom.
Apparently she is still delirious. She told me that she has been in the f$*%ing hospital for a month now and that everyone knows its Tuesday. (I am guessing that no one has changed the date on the calendar in her room yet today.) She then told me that she was not going to die in this d#$* hospital, that she wanted to die at home.
I tried to tell her that she'd only been in the hospital for about 18 hours and that I didn't want her to give up, that I wanted her to get better.
She hung up on me.
I called back and Dave was in the room and he said that she was trying to pull the IV out of her arm and leave in her hospital robe. He had a nurse in the room who was trying to reason with her, but she was yelling at the nurse that she was going home. Dave said they were trying to get a doctor in there right away.
Unfortunately, or fortunately, depending on how you look at it, the words I write don't do justice to the tone of her voice, the panic, frustration, and sheer obstinance that I hear when I talk to her.
And as her daughter, and the person on her health-care directive who will have to make decisions on her behalf when she is no longer able... do I see this as mom asserting her wishes, of which she is fully capable of doing, or do I - as I believe - recognize that she is not rational, that she might be making decisions (or trying to make decisions) based on how she feels, but that her perception is not reality? Do I force the issue and get her the treatment I think she needs? Or do I acknowledge that we might be getting close to the end and that I should see my role as supporting whatever it is she wants whether she is rational about it or not?
I don't know what to think. I am waiting for a doctor or nurse to call me back...
Apparently she is still delirious. She told me that she has been in the f$*%ing hospital for a month now and that everyone knows its Tuesday. (I am guessing that no one has changed the date on the calendar in her room yet today.) She then told me that she was not going to die in this d#$* hospital, that she wanted to die at home.
I tried to tell her that she'd only been in the hospital for about 18 hours and that I didn't want her to give up, that I wanted her to get better.
She hung up on me.
I called back and Dave was in the room and he said that she was trying to pull the IV out of her arm and leave in her hospital robe. He had a nurse in the room who was trying to reason with her, but she was yelling at the nurse that she was going home. Dave said they were trying to get a doctor in there right away.
Unfortunately, or fortunately, depending on how you look at it, the words I write don't do justice to the tone of her voice, the panic, frustration, and sheer obstinance that I hear when I talk to her.
And as her daughter, and the person on her health-care directive who will have to make decisions on her behalf when she is no longer able... do I see this as mom asserting her wishes, of which she is fully capable of doing, or do I - as I believe - recognize that she is not rational, that she might be making decisions (or trying to make decisions) based on how she feels, but that her perception is not reality? Do I force the issue and get her the treatment I think she needs? Or do I acknowledge that we might be getting close to the end and that I should see my role as supporting whatever it is she wants whether she is rational about it or not?
I don't know what to think. I am waiting for a doctor or nurse to call me back...
Tuesday, April 8, 2008
A rough day...
I never know where I should start with these things. The storyteller part of me thinks I should tell about the phone conversation I had with mom around 4:00 in the afternoon Monday... it went something like:
Me: How are you feeling?
Mom: Well, I dropped my pills into my bed last night and had to get the balls out of the sky because Dave was vacuuming and I told him he'd better f*$%ing get me Saturday back, but the dead man's socks were in my bed, and I always sit on the deck and have breakfast with the birds on Saturday...
Me: Did you get your pills back out of the bed?
Mom: What pills? I told you I put the dead man's socks on (incoherent rambling)....
Me: Mom, where are you right now?
Mom: I don't know, it's yellow and pink, with spots.
Me: Mom, are you sleeping? I am having a hard time understanding you.
Mom: Well you know how men can be...
Me: Mom, I am going to call you doctor. Stay by the phone and I'll call you back in a few minutes.
Or I could start out by letting you know that mom is in the hospital again.
Or, perhaps it would be better by telling you that through it all, I think there is humor in here somewhere. But since its now 3 am and I just got home from Southdale Fairview, and just tucked my kids into bed, who were with me all night at the hospital with mom, perhaps, I'll lay off the humor for now. Someday, perhaps we can look back and say, "do you remember that time..."
So, back to the rough day.
I did call the doctor - the one on call. (you can never actually reach Dr. Boente - we love him, but he's... well... busy.) Dr. Bailey said that if mom seemed delirious that we should bring her to ER. This simple call took about an hour, because she had to call me back. I called Dave. He said he'd head straight home. (he works second shift and mom was home alone tonight.) I called mom to let her know that I was coming over, but she didn't answer. I called a few times in a row thinking that it might take her a bit to get to the phone. Maybe she was in the bathroom. Maybe she was downstairs and the cordless was upstairs? I called my brother Craig. He lives about 10 minutes from mom's house and asked him to go and check on her. I kept trying to reach her on the phone, to no avail.
We were in the car on our way to mom's house when Dave called me asking where I was and was mom with me. I said I was on my way there and no, I didn't have mom with me. Then he said, "she's left, the truck is gone and so is she."
Which led to me saying, "hang up and call 911 right away."
I called Craig back, "mom is missing, Dave is home, mom took the truck, we need to go and look for her."
To which Craig said, "where should I start."
"Target first, call me when you get there."
I got to mom's at about 6:00 and pulled in just as my sister did. I hadn't even called her yet, she was just stopping by to visit mom out the blue. Just as we were walking up the driveway, Dave came out. Craig found mom at Target. (If you know mom, you'll know that this makes perfect sense, delirious or not, this is her home away from home.)
Dave got in my van, Ann followed in hers, and to Target we went. On the way I called Craig... Mom was apparently shopping for groceries, apparently some woman yelled at her on the road (not sure where this happened, mom can't remember) and told her that she should not be driving. I asked Craig how she was doing, and he said he was taking her to ER and that we should meet him there.
Hence, somehow we ended up with a somewhat spontaneous family reunion in the ER in Edina.
And, yes, there are definitely some funny parts to that story, and we are all trying desperately to stay lighthearted and upbeat, but its hard.
Mom has renal failure, her kidneys have shut down. Nobody knows exactly why this has happened, although they have tossed about some possibilities... tumor growth is restricting function of the kidneys and/or bladder, the chemo, the meds she is on or has been on... A kidney specialist will see her tomorrow. At this time treatment has started with IV fluids, and some stuff that will absorb the potassium in her system because the level was very high. Tomorrow, we'll talk about different options, a stint if they find a blockage, dialysis if things get worse or if we don't find a cause soon.
I have a belief that we naturally draw to us the things that we spend the most time thinking about, and its becoming somewhat challenging to deal with that right now. I can't help but think we are on a downward path here, and that I need to start emotionally preparing for the worst case scenario. And yet, I don't want to jinx her.
She was REALLY upset at the hospital tonight. After she heard that she was being admitted, she started sobbing and then tried to walk out of the ER. She wasn't able too because she had wires and tubes and all kinds of stuff she was connected to. She kept saying, "I don't want to die here like this, I want to go home." I know that she is feeling like everything is out of control and that she is becoming dependent on doctors who can barely remember her name, let alone the big things, like prescriptions and allergies.
And so, mom is at Fairview Southdale. She isn't well. She doesn't want visitors, she feels too "crappy." (her word, not mine).
Dave and I went to Target to pick up her truck. She is seriously lucky she didn't hurt anyone. She did hit a big post with the front of her car when she tried to park, but other than that, the car faired pretty well.
And now, its 3:40 am and I am going to bed. Good night.
Me: How are you feeling?
Mom: Well, I dropped my pills into my bed last night and had to get the balls out of the sky because Dave was vacuuming and I told him he'd better f*$%ing get me Saturday back, but the dead man's socks were in my bed, and I always sit on the deck and have breakfast with the birds on Saturday...
Me: Did you get your pills back out of the bed?
Mom: What pills? I told you I put the dead man's socks on (incoherent rambling)....
Me: Mom, where are you right now?
Mom: I don't know, it's yellow and pink, with spots.
Me: Mom, are you sleeping? I am having a hard time understanding you.
Mom: Well you know how men can be...
Me: Mom, I am going to call you doctor. Stay by the phone and I'll call you back in a few minutes.
Or I could start out by letting you know that mom is in the hospital again.
Or, perhaps it would be better by telling you that through it all, I think there is humor in here somewhere. But since its now 3 am and I just got home from Southdale Fairview, and just tucked my kids into bed, who were with me all night at the hospital with mom, perhaps, I'll lay off the humor for now. Someday, perhaps we can look back and say, "do you remember that time..."
So, back to the rough day.
I did call the doctor - the one on call. (you can never actually reach Dr. Boente - we love him, but he's... well... busy.) Dr. Bailey said that if mom seemed delirious that we should bring her to ER. This simple call took about an hour, because she had to call me back. I called Dave. He said he'd head straight home. (he works second shift and mom was home alone tonight.) I called mom to let her know that I was coming over, but she didn't answer. I called a few times in a row thinking that it might take her a bit to get to the phone. Maybe she was in the bathroom. Maybe she was downstairs and the cordless was upstairs? I called my brother Craig. He lives about 10 minutes from mom's house and asked him to go and check on her. I kept trying to reach her on the phone, to no avail.
We were in the car on our way to mom's house when Dave called me asking where I was and was mom with me. I said I was on my way there and no, I didn't have mom with me. Then he said, "she's left, the truck is gone and so is she."
Which led to me saying, "hang up and call 911 right away."
I called Craig back, "mom is missing, Dave is home, mom took the truck, we need to go and look for her."
To which Craig said, "where should I start."
"Target first, call me when you get there."
I got to mom's at about 6:00 and pulled in just as my sister did. I hadn't even called her yet, she was just stopping by to visit mom out the blue. Just as we were walking up the driveway, Dave came out. Craig found mom at Target. (If you know mom, you'll know that this makes perfect sense, delirious or not, this is her home away from home.)
Dave got in my van, Ann followed in hers, and to Target we went. On the way I called Craig... Mom was apparently shopping for groceries, apparently some woman yelled at her on the road (not sure where this happened, mom can't remember) and told her that she should not be driving. I asked Craig how she was doing, and he said he was taking her to ER and that we should meet him there.
Hence, somehow we ended up with a somewhat spontaneous family reunion in the ER in Edina.
And, yes, there are definitely some funny parts to that story, and we are all trying desperately to stay lighthearted and upbeat, but its hard.
Mom has renal failure, her kidneys have shut down. Nobody knows exactly why this has happened, although they have tossed about some possibilities... tumor growth is restricting function of the kidneys and/or bladder, the chemo, the meds she is on or has been on... A kidney specialist will see her tomorrow. At this time treatment has started with IV fluids, and some stuff that will absorb the potassium in her system because the level was very high. Tomorrow, we'll talk about different options, a stint if they find a blockage, dialysis if things get worse or if we don't find a cause soon.
I have a belief that we naturally draw to us the things that we spend the most time thinking about, and its becoming somewhat challenging to deal with that right now. I can't help but think we are on a downward path here, and that I need to start emotionally preparing for the worst case scenario. And yet, I don't want to jinx her.
She was REALLY upset at the hospital tonight. After she heard that she was being admitted, she started sobbing and then tried to walk out of the ER. She wasn't able too because she had wires and tubes and all kinds of stuff she was connected to. She kept saying, "I don't want to die here like this, I want to go home." I know that she is feeling like everything is out of control and that she is becoming dependent on doctors who can barely remember her name, let alone the big things, like prescriptions and allergies.
And so, mom is at Fairview Southdale. She isn't well. She doesn't want visitors, she feels too "crappy." (her word, not mine).
Dave and I went to Target to pick up her truck. She is seriously lucky she didn't hurt anyone. She did hit a big post with the front of her car when she tried to park, but other than that, the car faired pretty well.
And now, its 3:40 am and I am going to bed. Good night.
Wednesday, April 2, 2008
Chemo
Well, things didn't go exactly as expected when I last posted. Mom's post-op appointment was moved. The doctor called her Thursday morning and asked her to come in right away. And so, she and Dave went right in.
Mom is doing okay, but the regrowth of tumors and the pain was not what the doctor expected or wanted to see. The tumor growth has slowed the healing process so even though its been a month since the surgery, she hasn't healed yet.
Mom started chemo on Friday. She'll have chemo every three weeks for five hours at a time. The process of getting chemo is not as bad as mom thought it would be, in fact she met a woman who was sitting next to her in the chemo room who also had ovarian cancer. The woman was on her sixth treatment and is doing really well. Her hair was starting to grow back, she had her appetite, she said that between treatments she was living her normal life... going to work, hanging out with friends and family.... Mom was very encouraged.
We were all prepared for Mom to be really sick the first few days after chemo. But as we are learning, Mom doesn't appear to be the text book case for anything. Friday night she was exhausted and nauseaus. Saturday she woke up nauseaus, but was doing okay other than being tired. The kids and I were over there Saturday. Mom asked me to cut her hair short, and I am happy to report that it's super cute, which is actually a total fluke. I've given about a total of 10 haircuts in my life, and 8 of them have been crap. I bought mom a diamond circle of life necklace and gave it to her before I cut her hair, thinking that if I made a huge mess of it at least she'd have a nice necklace and wouldn't get too upset with me... but as luck would have it, Mom ended up with one of my few "good" haircuts. She is expecting that she will lose her hair between now and her next chemo appointment, and she didn't want to wake up to giant chunks of long hair on her pillow.
On a tangential note, I got my hair cut short too. Mom's friend Darlene is getting hers cut short today. If you have long hair, it's hard to imagine not having it, its a part of your identity. I imagine thats true if you have short hair too, but I've never had short hair. And well, there aren't many things that I can do with or for my mom during this process, but getting my hair cut is something I can do. (I don't even know if what I just wrote makes sense, but it is what it is.)
Sunday I talked to Mom on the phone and she was really exhausted and slept most of the day. Yesterday was the worst day so far. (although I wonder if that means worse than the pain before surgery... after surgery... ever.... I don't know.) The doctor gave her a new pain killer - OxyContin - which seems to help, although it knocks her out. I spent the evening with her while Dave was at work. She slept until about 6:30 pm, had an english muffin for dinner - her first "meal" for the day - watched American Idol, the results show for Dancing with the Stars, and then part of the Barbara Walters Special, before going back to bed at about 9:30.
Dave got home at about 12:45 last night. He is exhausted too, and very worried.
I just have to believe that this is all going to get better as time passes.
Mom is doing okay, but the regrowth of tumors and the pain was not what the doctor expected or wanted to see. The tumor growth has slowed the healing process so even though its been a month since the surgery, she hasn't healed yet.
Mom started chemo on Friday. She'll have chemo every three weeks for five hours at a time. The process of getting chemo is not as bad as mom thought it would be, in fact she met a woman who was sitting next to her in the chemo room who also had ovarian cancer. The woman was on her sixth treatment and is doing really well. Her hair was starting to grow back, she had her appetite, she said that between treatments she was living her normal life... going to work, hanging out with friends and family.... Mom was very encouraged.
We were all prepared for Mom to be really sick the first few days after chemo. But as we are learning, Mom doesn't appear to be the text book case for anything. Friday night she was exhausted and nauseaus. Saturday she woke up nauseaus, but was doing okay other than being tired. The kids and I were over there Saturday. Mom asked me to cut her hair short, and I am happy to report that it's super cute, which is actually a total fluke. I've given about a total of 10 haircuts in my life, and 8 of them have been crap. I bought mom a diamond circle of life necklace and gave it to her before I cut her hair, thinking that if I made a huge mess of it at least she'd have a nice necklace and wouldn't get too upset with me... but as luck would have it, Mom ended up with one of my few "good" haircuts. She is expecting that she will lose her hair between now and her next chemo appointment, and she didn't want to wake up to giant chunks of long hair on her pillow.
On a tangential note, I got my hair cut short too. Mom's friend Darlene is getting hers cut short today. If you have long hair, it's hard to imagine not having it, its a part of your identity. I imagine thats true if you have short hair too, but I've never had short hair. And well, there aren't many things that I can do with or for my mom during this process, but getting my hair cut is something I can do. (I don't even know if what I just wrote makes sense, but it is what it is.)
Sunday I talked to Mom on the phone and she was really exhausted and slept most of the day. Yesterday was the worst day so far. (although I wonder if that means worse than the pain before surgery... after surgery... ever.... I don't know.) The doctor gave her a new pain killer - OxyContin - which seems to help, although it knocks her out. I spent the evening with her while Dave was at work. She slept until about 6:30 pm, had an english muffin for dinner - her first "meal" for the day - watched American Idol, the results show for Dancing with the Stars, and then part of the Barbara Walters Special, before going back to bed at about 9:30.
Dave got home at about 12:45 last night. He is exhausted too, and very worried.
I just have to believe that this is all going to get better as time passes.
Wednesday, March 26, 2008
Bad News
I apologize for not posting in the last few weeks. I think the reality of this process took (and is still taking) a bigger toll on me then I expected. As I am sure you can imagine, I feel like I have no ground to complain, to be tired, or even to vent.... my job right now is to stay strong for mom. But it's hard.
Surgery was four weeks ago today.
We've been biding time since surgery, waiting for mom to be well enough to start chemo. Two weeks ago, she went to the ER due to shortness of breath and pain in her lungs. The doctor was concerned about a possible blood clot and so they ran another CT scan. The CT scan ruled out a blood clot in her lungs but there was a build up of acidic fluid in her abdominal cavity. The doctor said that cancer tumors produce this fluid, and its not surprising that it is there. He said he would send the CT scan to mom's specialist, and they would decide if the fluid should be drained prior to starting chemo.
Since then, mom has been having more and more bad days. The pain has gotten worse, not better, since surgery. The nausea is back full force. And she is miserable.
On Monday this week, we attended a class at the clinic for chemo, basically a "what you need to know before you start your chemo" class. After the class, mom asked to talk to a nurse because she was concerned about the pressure and the return of the swelling in her abdomen. The nurse said she would talk to Dr. Boente about it and get back to mom. Dr. Boente scheduled another CT scan for the very next day.
We got the results back today.
After only four weeks since surgery, where they "got it all out," the cancer tumors are back in full force. Mom isn't well enough for another surgery, and they won't schedule chemo until after she has her post-op, which is this coming Friday, and then only if her body is healed enough to handle chemo.
Mom is both depressed and frightened with the new news.
I'll be at the appointment on Friday for her post op, and hopefully we'll get a schedule for chemo that day. I'll post an update then.
If you are reading this and feel like you might be willing to help me keep this blog up to date by talking to me about what is going on, and then posting it here, let me know. I'd appreciate the help. You can email me at leisairwin(at)msn.com or call me.
Also, if you are up to visiting mom for a few hours in the evenings when Dave is at work, let me know that too. She isn't up for long visits, but she also doesn't like to be alone in the evenings, she would like to have someone just hang out and watch tv with her.
Surgery was four weeks ago today.
We've been biding time since surgery, waiting for mom to be well enough to start chemo. Two weeks ago, she went to the ER due to shortness of breath and pain in her lungs. The doctor was concerned about a possible blood clot and so they ran another CT scan. The CT scan ruled out a blood clot in her lungs but there was a build up of acidic fluid in her abdominal cavity. The doctor said that cancer tumors produce this fluid, and its not surprising that it is there. He said he would send the CT scan to mom's specialist, and they would decide if the fluid should be drained prior to starting chemo.
Since then, mom has been having more and more bad days. The pain has gotten worse, not better, since surgery. The nausea is back full force. And she is miserable.
On Monday this week, we attended a class at the clinic for chemo, basically a "what you need to know before you start your chemo" class. After the class, mom asked to talk to a nurse because she was concerned about the pressure and the return of the swelling in her abdomen. The nurse said she would talk to Dr. Boente about it and get back to mom. Dr. Boente scheduled another CT scan for the very next day.
We got the results back today.
After only four weeks since surgery, where they "got it all out," the cancer tumors are back in full force. Mom isn't well enough for another surgery, and they won't schedule chemo until after she has her post-op, which is this coming Friday, and then only if her body is healed enough to handle chemo.
Mom is both depressed and frightened with the new news.
I'll be at the appointment on Friday for her post op, and hopefully we'll get a schedule for chemo that day. I'll post an update then.
If you are reading this and feel like you might be willing to help me keep this blog up to date by talking to me about what is going on, and then posting it here, let me know. I'd appreciate the help. You can email me at leisairwin(at)msn.com or call me.
Also, if you are up to visiting mom for a few hours in the evenings when Dave is at work, let me know that too. She isn't up for long visits, but she also doesn't like to be alone in the evenings, she would like to have someone just hang out and watch tv with her.
Wednesday, February 27, 2008
Surgery
Surgery went well. It got off to a late start, and therefore didn't finish until late. It's just after midnight and I've been home for about 20 minutes.
Doctor Boente met with us while mom was in recovery. He said that he thinks they got all the tumors. He said he removed a tumor about "this" big and held his hands about 18 inches apart. On the way home, my kids started saying a tumor that size would be about the size of Ernie (one of our cats). And so, now we are calling Ernie "Tumor" and we are talking about mom's tumor as the Ernie sized tumor.
Mom was back in her room when I left tonight. She said she felt okay, although a bit worn out from the days events. Her throat hurt, she was coughing a bit, and she was tired. But she was really happy to see us, and she cried when we told her that the doctor got all of it.
We expect that she will be in the hospital for about 4 days, then she'll be resting at home for a few weeks before starting chemo.
As a side note... Mayo called today to schedule an appointment for an evaluation for Mom. They were looking at date near the end of next week. And the machine keeps running.
Doctor Boente met with us while mom was in recovery. He said that he thinks they got all the tumors. He said he removed a tumor about "this" big and held his hands about 18 inches apart. On the way home, my kids started saying a tumor that size would be about the size of Ernie (one of our cats). And so, now we are calling Ernie "Tumor" and we are talking about mom's tumor as the Ernie sized tumor.
Mom was back in her room when I left tonight. She said she felt okay, although a bit worn out from the days events. Her throat hurt, she was coughing a bit, and she was tired. But she was really happy to see us, and she cried when we told her that the doctor got all of it.
We expect that she will be in the hospital for about 4 days, then she'll be resting at home for a few weeks before starting chemo.
As a side note... Mayo called today to schedule an appointment for an evaluation for Mom. They were looking at date near the end of next week. And the machine keeps running.
Tuesday, February 26, 2008
The Highlight (to date)
Mom was transferred to Fairview Southdale at 3:00 today. She was supposed to see the gyn oncologist today at 3:10. It wasn't possible for us to get her there on our own. Burnsville made the arrangements and for the most part, it was a smooth transition. Once again, however, I was surprised that they were not prepared with the pain meds.
The gyn oncology surgeon came to Mom's room after she'd been there for about an hour. The good news is he seemed to really know what he was talking about, and his confidence made all of us more comfortable. Surgery is tomorrow and he said that mom will be up and walking around and eating dinner by tomorrow night. He also told us about the process, that he'll do everything he can in surgery to get all of the cancer. He said that mom will be in the hospital for anywhere from 2 - 5 days after surgery (compare this with the 30 days+ estimate given to us by the other oncologist.)
I have to say that if this doctor delivers what he told us today, he will become my favorite doctor in the whole world. I'm saying my prayers.
The gyn oncology surgeon came to Mom's room after she'd been there for about an hour. The good news is he seemed to really know what he was talking about, and his confidence made all of us more comfortable. Surgery is tomorrow and he said that mom will be up and walking around and eating dinner by tomorrow night. He also told us about the process, that he'll do everything he can in surgery to get all of the cancer. He said that mom will be in the hospital for anywhere from 2 - 5 days after surgery (compare this with the 30 days+ estimate given to us by the other oncologist.)
I have to say that if this doctor delivers what he told us today, he will become my favorite doctor in the whole world. I'm saying my prayers.
A Setback
Mom went to the ER last night (Monday) and was admitted to the Fairview Ridges Hospital in Burnsville.
Craig (my brother, the baby in the family) suggested that in hindsight we should have been running a video camera throughout this entire process. He said we could make the next "SICKO" movie with this stuff. While we are all trying to be as understanding as possible when complications occur, it is very frustrating when it feels like we were lead to expect one thing and the reality is something completely different.
Mom's oncologist had told her on Friday that their main concern leading up to surgery was to keep the pain under control. We were told that if the pain could not be managed at home, to call the doctor, take Mom to ER and that she would be admitted to the hospital so that we could get her the right meds to relieve the pain.
Well, it didn't happen like that. We called, just like we were told to do, but we found out that our doctor was out for the week. I am still really struggling with this. I have to assume that something came up unexpectedly that made it impossible for Mom's doctor to tell us she was leaving or to prep the doctor filling in for her. But, I have to say, that even if that is the case, then I feel a bit like the clinic as a whole messed up. The doctor on-call Monday night was an arrogant, rude, asshole. (Please forgive my language.) First, my sister called the clinic and got the "answering service." The doctor called back. My sister said that we needed to take mom to the hospital and could he call ahead and get the admittance started so that they could get her pain meds right away when she got there. His response was to yell at my sister. He told her it didn't work that way. When she asked how it did work, he yelled at her again.
When Mom got to ER, she was in excruciating pain. ER was not ready for us, and they had to call the doctor Ann had just called. He then yelled at the ER doctor. They did admit mom, but when she got to the right floor, and into the room, they did not have any orders for pain meds. It took several hours to get mom meds, then when they finally came in they didn't have the right anti-nausea medication. I ended up taking the prescription we had from the other doctor out of her purse and giving it to her (much to the irritation of the nurse in the room.) It took another 30 minutes after that to get the morphine figured out.
Mom was such a wreck from what appeared to be a complete breakdown in communication between the people who we rely on for help, that she was insistent that she go home. That really wasn't a possibility, but it was indicative of mom's frustration level.
I ended up spending the night in the hospital and became quite a pain in the rear for the nurse. By about 4 am, we had everything down. Anti-nausea via drip, extended release morphine in the right doses at the right times, instant release morphine via IV, and ativan to help with anxiety and it works well for anti-nausea too.
I suppose I sound a bit ungrateful to the medical professionals. I am not really. It took some time, but it all go worked out. I just really struggle with the balance... this is MY MOM suffering here and yes, I know they need to follow procedures, care for others, etc... I value that. It just felt like it shouldn't have been so compliocated to get to the point we arrived at around 4 am.
Craig (my brother, the baby in the family) suggested that in hindsight we should have been running a video camera throughout this entire process. He said we could make the next "SICKO" movie with this stuff. While we are all trying to be as understanding as possible when complications occur, it is very frustrating when it feels like we were lead to expect one thing and the reality is something completely different.
Mom's oncologist had told her on Friday that their main concern leading up to surgery was to keep the pain under control. We were told that if the pain could not be managed at home, to call the doctor, take Mom to ER and that she would be admitted to the hospital so that we could get her the right meds to relieve the pain.
Well, it didn't happen like that. We called, just like we were told to do, but we found out that our doctor was out for the week. I am still really struggling with this. I have to assume that something came up unexpectedly that made it impossible for Mom's doctor to tell us she was leaving or to prep the doctor filling in for her. But, I have to say, that even if that is the case, then I feel a bit like the clinic as a whole messed up. The doctor on-call Monday night was an arrogant, rude, asshole. (Please forgive my language.) First, my sister called the clinic and got the "answering service." The doctor called back. My sister said that we needed to take mom to the hospital and could he call ahead and get the admittance started so that they could get her pain meds right away when she got there. His response was to yell at my sister. He told her it didn't work that way. When she asked how it did work, he yelled at her again.
When Mom got to ER, she was in excruciating pain. ER was not ready for us, and they had to call the doctor Ann had just called. He then yelled at the ER doctor. They did admit mom, but when she got to the right floor, and into the room, they did not have any orders for pain meds. It took several hours to get mom meds, then when they finally came in they didn't have the right anti-nausea medication. I ended up taking the prescription we had from the other doctor out of her purse and giving it to her (much to the irritation of the nurse in the room.) It took another 30 minutes after that to get the morphine figured out.
Mom was such a wreck from what appeared to be a complete breakdown in communication between the people who we rely on for help, that she was insistent that she go home. That really wasn't a possibility, but it was indicative of mom's frustration level.
I ended up spending the night in the hospital and became quite a pain in the rear for the nurse. By about 4 am, we had everything down. Anti-nausea via drip, extended release morphine in the right doses at the right times, instant release morphine via IV, and ativan to help with anxiety and it works well for anti-nausea too.
I suppose I sound a bit ungrateful to the medical professionals. I am not really. It took some time, but it all go worked out. I just really struggle with the balance... this is MY MOM suffering here and yes, I know they need to follow procedures, care for others, etc... I value that. It just felt like it shouldn't have been so compliocated to get to the point we arrived at around 4 am.
Saturday, February 23, 2008
The Next Steps
Well we met with the oncologist again yesterday. Overall, I'd say it was a good meeting. There were 5 of us crammed into an exam room with the doctor (I guess that makes 6.) We learned that everything we had been told before had been confirmed. Yes, she has ovarian cancer, yes the tumors are everywhere, and yes, it is an advanced stage.
The good news, we are going to one of the best gyn oncologist specialists in the metro area. He is from the University of MN, and a specialist and expert in this area.
Mom will be having surgery first, probably next week, and she'll be in the hospital for (in the doctors words) "a long time" afterwards. They are doing a "debulking" surgery and will remove as much as possible. She'll start chemo after that.
It looks like it will be a long road, but Mom is up to it, and we'll all be here helping as much as we can along the way.
Also, they changed Mom's meds and based on last night, I think they may have the pain under control. She is taking 2 different prescriptions of Morphine, one is an extended release (or long lasting) prescription which keeps a constant level of Morphine in her system at all times, and the other is the immediate release, which she can take as needed as the pain spikes up. She seemed comfortable for the first time this week.
Our next appointment is with the surgeon on Tuesday. I'll let you know how it goes.
The good news, we are going to one of the best gyn oncologist specialists in the metro area. He is from the University of MN, and a specialist and expert in this area.
Mom will be having surgery first, probably next week, and she'll be in the hospital for (in the doctors words) "a long time" afterwards. They are doing a "debulking" surgery and will remove as much as possible. She'll start chemo after that.
It looks like it will be a long road, but Mom is up to it, and we'll all be here helping as much as we can along the way.
Also, they changed Mom's meds and based on last night, I think they may have the pain under control. She is taking 2 different prescriptions of Morphine, one is an extended release (or long lasting) prescription which keeps a constant level of Morphine in her system at all times, and the other is the immediate release, which she can take as needed as the pain spikes up. She seemed comfortable for the first time this week.
Our next appointment is with the surgeon on Tuesday. I'll let you know how it goes.
Wednesday, February 20, 2008
The Biopsy
Mom went to the hospital this morning for the biopsy. The procedure itself went well. Waiting in the waiting room for the procedure to begin really sucked. Mom couldn't eat or drink anything (not even water) for 4 hours preceding the biopsy. She can't take her morphine without eating, and so she had taken the last dose of morphine at 6:30 am. Apparently something had gone wrong earlier in the morning in the radiology department and so everything was running behind. After 2 hours in the waiting room, mom was reaching her threshhold for pain. Near noon I went to the desk and told the receptionists that they needed to get my mom some help right away. She wasn't going to make it another 10 minutes. Fortunately they paged a nurse and they were able to bring mom directly in and give her an IV with pain meds.
Tuesday, February 19, 2008
The PET Scan
We went to LifeScan in Edina today for the PET Scan. I think LifeScan must make a lot of money... leather sofas, mahogony chairs with brocade padded seats... not that any of that is relevant. All that really matters is they do their jobs well.
At the end of the appointment they gave us a disk with mom's PET scan results. Obviously, I have no training in these matters at all, in fact I told mom that I wasn't even able to decipher where her organs were on the scan. That's not entirely true however, but the scan is so damn depressing that I don't dare give her the results. In fact, I am keeping my fingers crossed that I am completely wrong, but you can clearly see that due to the tumors and the fluid in my mom's abdomen that her lungs are being squooshed to about half their normal size. It looks like the tumors are all over the place, again, I pray I am wrong. We'll know for certain when we get the results back from the oncologist on Friday.
I had this copy created so that we can hand carry it to Mayo with us. I'll be making that trip in the next day or so.
Mom is still in a lot of pain, but it does taper off for a few hours right after she takes her morphine. Unfortunately, as soon as the pain is out of control, it takes awhile to get it back to a manageable point. She is staying very strong in thought though, even with the pain. She is determined to beat this.
Tomorrow is the biopsy. I'll post more then.
At the end of the appointment they gave us a disk with mom's PET scan results. Obviously, I have no training in these matters at all, in fact I told mom that I wasn't even able to decipher where her organs were on the scan. That's not entirely true however, but the scan is so damn depressing that I don't dare give her the results. In fact, I am keeping my fingers crossed that I am completely wrong, but you can clearly see that due to the tumors and the fluid in my mom's abdomen that her lungs are being squooshed to about half their normal size. It looks like the tumors are all over the place, again, I pray I am wrong. We'll know for certain when we get the results back from the oncologist on Friday.
I had this copy created so that we can hand carry it to Mayo with us. I'll be making that trip in the next day or so.
Mom is still in a lot of pain, but it does taper off for a few hours right after she takes her morphine. Unfortunately, as soon as the pain is out of control, it takes awhile to get it back to a manageable point. She is staying very strong in thought though, even with the pain. She is determined to beat this.
Tomorrow is the biopsy. I'll post more then.
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