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.
Thursday, April 17, 2008
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.
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