745 PM
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| Mike, Bonnie, and Don Funny how everyone looks better with a mask |
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| War Stories |
Tuesday, July 31, 2012
The Eidems Were Here
First Walk in a While
Getting Cleaned Up
Alyssa came by this morning and helped her Mom get cleaned up. |
| Pam and Alyssa (and Austin) Beauty Treatment |
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| Still can't brush her teeth. Using a little dental sponge on a stick |
Pam's mouth is so sore, she can't brush her teeth, so she is using a special dental sponge type thing on a stick.
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| Looking and Feeling Better (the flowers are fake) |
Had a few episodes of nausea and vomiting, but the sore mouth and throat are by far the worse symptoms right now. She is having trouble eating anything that is hot, spicy, chewy, crunchy or tastes good. She had a little tapioca (argh!), some cold chicken noodle soup (double argh!), some canned peaches, a couple of nutrition drinks.
4 PM
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| Tables are turned... she has to wear a mask in the hallway |
She is really anxious for her parents, Mike and Sandra, Toby and Samantha's visit this evening.
Visitation Postponed
Last Night
We had planned on having Mike and Sandra bring Pam's Mom and Dad to the hospital yesterday afternoon for a visit. It has been really tough on them, because we have been holding off on visitors while Pam was so sick. As luck would have it, Pam got sick right about then, and she asked me to call them and ask them to hold off. It broke my heart, but they were great about it. I explained to Bonnie, Pam's Mom, that it isn't that Pam is more sick, she is still improving, but the timing was just bad.We will try again today.
830 AM
When I got to the hospital this morning, Pam looked groggy. I said "Oh no, you had a bad night, didn't you?" She said, "No, I slept really well, I'm just having trouble waking up."She has had some intermittent nausea and vomiting, but it responds really well to medication. She is "on target" for regenerating blood cells, and she is completely off of oxygen except for when she is sleeping. She has a slight touch of jaundice, but the doctors area aware of it and will be watching her liver function.
The senior resident was commenting on her lung function and said "We would have intubated most people." Meaning, most people with lungs that were in as bad a shape as Pam's would have had to breathe on a respirator, so everyone is relieved that they didn't have to go to that extreme.
Now that she is more stable, I am going to have someone else watch her for part of the day so I can make an appearance at work and at least give my best impression of being productive. I am really not comfortable leaving her alone.
I have got to say that my friends and colleagues at Clinicient have been great. My email has died down to almost nothing and I know that they are taking things off of my plate. I tend to get wrapped up in my work to the exclusion of everything else at times, but it turns out that the company continues to operate just fine in my absence.
Here is where I work, if you are interested: Clinicient. I am very proud of the company and, more importantly all of the dedicated people there.
So it goes ....
Monday, July 30, 2012
Good Numbers and Well Wishes
Good Numbers
Pam's oncologist, Dr. Weinstein, reports to us that her White Blood Cell count is now down to .1 She started at 110. He is very pleased with the results. She also had one favorable test result that came back today, indicating a better prognosis.Although her lung problem is very nearly resolved, she is still very sick. Her mouth and throat are raw and it is difficult for her to eat anything. She has also had a few sporadic episodes of nausea and vomiting.
Nice Cards and Well Wishes
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| Nice Card from Jordan |
Here she is with a great card from Jordan, her brother Mike's granddaughter:
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| Our "Back Yard" |
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| Pam's Tomato Plant |
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| Pam's Tomato Crop |
Out of CCU!
Today is a big day... Pam is out of CCU and back on the oncology floor at the hospital. It is a lot more quiet without all of the monitoring equipment. Her oxygen has been turned way down and she is tolerating it just fine. One of the residents showed me her chest xray from 3 days ago compared to today, and it is a dramatic improvement.
Moving back to the oncology ward is a lot more convenient for me, because I can have my computer in the room and don't have to check in to get onto the floor all of the time. As I keep explaining to Pam, it is all about me and my convenience, after all.
She still has a lot of mouth and throat pain, so we are trying to get on top of that. I am hoping that Pam will be able to walk to the bathroom later today and, possibly walk in the hallway by tomorrow. (Sorry, the physical therapist in me starting to come out there... )
Right now, she is sleeping and looks comfortable. She is talking in her sleep again:
"What do people do with it"
"You know what I mean"
"I fell"
Thank you all again for your prayers and good wishes. Things are getting better all of the time.
Moving back to the oncology ward is a lot more convenient for me, because I can have my computer in the room and don't have to check in to get onto the floor all of the time. As I keep explaining to Pam, it is all about me and my convenience, after all.
She still has a lot of mouth and throat pain, so we are trying to get on top of that. I am hoping that Pam will be able to walk to the bathroom later today and, possibly walk in the hallway by tomorrow. (Sorry, the physical therapist in me starting to come out there... )
Right now, she is sleeping and looks comfortable. She is talking in her sleep again:
"What do people do with it"
"You know what I mean"
"I fell"
Thank you all again for your prayers and good wishes. Things are getting better all of the time.
Sunday, July 29, 2012
Chemo Complete
First round of chemo is complete, and everyone is happy about it, including the nurses and residents. It may be my imagination, but everyone seems to be pulling for Pam. Residents who aren't on her case any longer poke their head in the door to see how she is doing, nurses seem to go the extra mile and do little things that aren't requested. It is very touching.
Looks like she will get out of the Critcal Care Unit and back on the onocology floor sometime tomorrow. She is much less dependent on oxygen and it is obvious that she has less fatigue. She still has a lot of oral pain and she can't really eat much of anything. She got a shot of morphine for the pain before I left at about 10 PM, so I am sure it is "lights out" for her and she will rest comfortably tonight.
I am hoping she feels well enough tomorrow that we can see if her parents can come and visit.
I have told everyone that if we changed places and I were the one with Pam's symptoms, everyone would be painfully aware of it. The nurses just smile and nod.... I know they know it's true.
Tomorrow is a big day.
Looks like she will get out of the Critcal Care Unit and back on the onocology floor sometime tomorrow. She is much less dependent on oxygen and it is obvious that she has less fatigue. She still has a lot of oral pain and she can't really eat much of anything. She got a shot of morphine for the pain before I left at about 10 PM, so I am sure it is "lights out" for her and she will rest comfortably tonight.
I am hoping she feels well enough tomorrow that we can see if her parents can come and visit.
I have told everyone that if we changed places and I were the one with Pam's symptoms, everyone would be painfully aware of it. The nurses just smile and nod.... I know they know it's true.
Tomorrow is a big day.
Moving from CCU?
1 PM
Quick update: Pam's respiratory problems are continuing to improve. She is sitting up in a chair and using less oxygen. She had a nice phone discussion with her parents for the first time in a few days. This first round of chemotherapy will be completed within the hour.
She may be moved from the Critical Care Unit as early as tomorrow. She just needs to be able to get by with a lower dose of oxygen.
I asked her this morning how she was feeling and she said "If it wasn't for this leukemia, I would feel great!".
Quick update: Pam's respiratory problems are continuing to improve. She is sitting up in a chair and using less oxygen. She had a nice phone discussion with her parents for the first time in a few days. This first round of chemotherapy will be completed within the hour.
She may be moved from the Critical Care Unit as early as tomorrow. She just needs to be able to get by with a lower dose of oxygen.
I asked her this morning how she was feeling and she said "If it wasn't for this leukemia, I would feel great!".
Quite an Inspiration
Pam Update
Pam is slowly improving. She is able to breathe with a lower dose of oxygen and was able to sit up in a chair for a while today. (Hooray!) We joke that this is the worst case of allergies ever.
We are beginning to think about next steps in her treatment. She only has one more day of chemo, and we are assuming that her respiratory problems will improve rapidly afterward.
Unfortunately, she still can't see many visitors because of her fatigue and her compromised immunity. I call her parents at least twice a day, and even though I know they understand, it breaks my heart to tell them that I don't know when Pam will be up to having visitors.
I am spending a lot of my day either sitting in the waiting room, or sitting in Pam's hospital room.
In the hospital room, when Pam is comfortable and sleeping, I read a book. When she is awake, all I can do is little things: rub her back or feet, get her a Kleenex, grab a pillow, move the bedside table, entertain her and the nursing staff with humorous anecdotes and hilarious jokes, things like that.
Hanging around in the waiting room I try to get some work done and accomplish very little.
The Hospital Community
There is a sense of community in a hospital that I have almost forgotten existed: patients, families, loved ones, nurses, physicians, volunteers, cafeteria workers, maintenance, security, and others all form this small community with it's own unique set of written and unwritten rules, rituals, and mores. Everyone has a story:
She Calls Me Buzz
One elderly gentleman who is at the hospital day and night will talk with anyone in the room about his critically ill wife. He always has a smile on his face and tries to assure everyone around him that even though his wife is very ill, she will pull through and return home with him. I asked him why he was sleeping in the hospital waiting room instead of using the inexpensive nearby housing for families of critically ill patients: "My wife always calls me Buzz or Buzzie and I am afraid she will wake up and need me. You see, Buzz isn't my real name, so I don't think the doctors will know she wants me. I just know she'll call me Buzz. I just don't want any confusion."
The Little Volunteer
A little lady with a cane, a lot of rouge, and a blue hospital volunteer uniform works in the waiting room every Friday, as she has for 30 years. Any day but Friday, a visitor can pick up a phone in the waiting room, ask if a patient can see a visitor, and be let in remotely. On Friday, the process changes and the phone system goes out the window. If you make the mistake of trying to use the phone as you were previously instructed, she will politely but firmly forbid it. Instead, she personally walks back to the ward to seek permission for your visit on your behalf. "It is easier on the nurses this way." she says. She also reminds you to wash your hands and not stay too long.
The Persians
The patriarch of a family that immigrated from Iran after the Shah was overthrown in 1979 is very ill. The family has flown in from all parts of the country to be by his side. They are all accomplished professionals: an architect, a dentist, and a PhD computer scientist. The patriarch was a Pediatrician and was pursuing another degree in English after he retired from medicine. One member of the family is always on duty in the waiting room.
It is all pretty inspiring, but I still wish Pam wasn't sick.
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| A Chair!!! |
We are beginning to think about next steps in her treatment. She only has one more day of chemo, and we are assuming that her respiratory problems will improve rapidly afterward.
Unfortunately, she still can't see many visitors because of her fatigue and her compromised immunity. I call her parents at least twice a day, and even though I know they understand, it breaks my heart to tell them that I don't know when Pam will be up to having visitors.
I am spending a lot of my day either sitting in the waiting room, or sitting in Pam's hospital room.
In the hospital room, when Pam is comfortable and sleeping, I read a book. When she is awake, all I can do is little things: rub her back or feet, get her a Kleenex, grab a pillow, move the bedside table, entertain her and the nursing staff with humorous anecdotes and hilarious jokes, things like that.
Hanging around in the waiting room I try to get some work done and accomplish very little.
The Hospital Community
There is a sense of community in a hospital that I have almost forgotten existed: patients, families, loved ones, nurses, physicians, volunteers, cafeteria workers, maintenance, security, and others all form this small community with it's own unique set of written and unwritten rules, rituals, and mores. Everyone has a story:
She Calls Me Buzz
One elderly gentleman who is at the hospital day and night will talk with anyone in the room about his critically ill wife. He always has a smile on his face and tries to assure everyone around him that even though his wife is very ill, she will pull through and return home with him. I asked him why he was sleeping in the hospital waiting room instead of using the inexpensive nearby housing for families of critically ill patients: "My wife always calls me Buzz or Buzzie and I am afraid she will wake up and need me. You see, Buzz isn't my real name, so I don't think the doctors will know she wants me. I just know she'll call me Buzz. I just don't want any confusion."
The Little Volunteer
A little lady with a cane, a lot of rouge, and a blue hospital volunteer uniform works in the waiting room every Friday, as she has for 30 years. Any day but Friday, a visitor can pick up a phone in the waiting room, ask if a patient can see a visitor, and be let in remotely. On Friday, the process changes and the phone system goes out the window. If you make the mistake of trying to use the phone as you were previously instructed, she will politely but firmly forbid it. Instead, she personally walks back to the ward to seek permission for your visit on your behalf. "It is easier on the nurses this way." she says. She also reminds you to wash your hands and not stay too long.
The Persians
The patriarch of a family that immigrated from Iran after the Shah was overthrown in 1979 is very ill. The family has flown in from all parts of the country to be by his side. They are all accomplished professionals: an architect, a dentist, and a PhD computer scientist. The patriarch was a Pediatrician and was pursuing another degree in English after he retired from medicine. One member of the family is always on duty in the waiting room.
It is all pretty inspiring, but I still wish Pam wasn't sick.
Friday, July 27, 2012
Just to Clarify
First of all, an important clarification: The graph I included in my last blog shows that her white blood cell count is decreasing dramatically, which is a very good thing.
The whole goal of this first phase of treatment is to kill off Pam's white blood cells. At that point, her leukemia will be in remission. When we first started chemo, the goal was to get her count "under 5". We are well below that now, but in spite of Pam being so sick, they will continue the chemo a couple of more days, because getting the count even lower is better.
In the second phase of treatment, she will more than likely need a bone marrow transplant so she can start producing healthy blood again.
I asked her oncologist today "how low can it go"? In other words, will her count ever get to zero? Is that really the ideal goal? He said "well, there might be a few very scared white blood cells running around, the count never gets to zero, they will always find a few, but we want to get as close to zero as we can".
We also discussed other important matters like the wisdom of the Ichiro trade in light of his crappy on base percentage. Dr. Weinstein happens to agree with me on the trade, which confirms my suspicion that he is a man of great wisdom and impeccable judgment.
When I left the hospital, Pam was pretty comfortable and her respiratory distress seems to be improving. They are beginning to wean her from the oxygen, and it seems to be slowly improving.
Her nurse got her cleaned up this evening and put her hair in braids to keep it out of her face. I told her that she looked kind of cute that way, and she said "Right, I am just glad there isn't a mirror, I look like a mess." I said, "yea, I guess you do, but you're my mess", at which point she made a goofy face in lieu of an obscene gesture of some sort.
We are both very thankful for the support of our friends and family. PLEASE... feel free to call me if you have any questions or want to talk.
The whole goal of this first phase of treatment is to kill off Pam's white blood cells. At that point, her leukemia will be in remission. When we first started chemo, the goal was to get her count "under 5". We are well below that now, but in spite of Pam being so sick, they will continue the chemo a couple of more days, because getting the count even lower is better.
In the second phase of treatment, she will more than likely need a bone marrow transplant so she can start producing healthy blood again.
I asked her oncologist today "how low can it go"? In other words, will her count ever get to zero? Is that really the ideal goal? He said "well, there might be a few very scared white blood cells running around, the count never gets to zero, they will always find a few, but we want to get as close to zero as we can".
We also discussed other important matters like the wisdom of the Ichiro trade in light of his crappy on base percentage. Dr. Weinstein happens to agree with me on the trade, which confirms my suspicion that he is a man of great wisdom and impeccable judgment.
When I left the hospital, Pam was pretty comfortable and her respiratory distress seems to be improving. They are beginning to wean her from the oxygen, and it seems to be slowly improving.
Her nurse got her cleaned up this evening and put her hair in braids to keep it out of her face. I told her that she looked kind of cute that way, and she said "Right, I am just glad there isn't a mirror, I look like a mess." I said, "yea, I guess you do, but you're my mess", at which point she made a goofy face in lieu of an obscene gesture of some sort.
We are both very thankful for the support of our friends and family. PLEASE... feel free to call me if you have any questions or want to talk.
A Beautiful Picture
5 PM
Pam is feeling a little better this afternoon. She has had another unit of blood and some platelets. They are also continuing with the Lasix to get rid of the fluid on her lungs. She is fairly comfortable and not in respiratory distress, but is still dependent on an oxygen mask.
Had a nice visit with Alyssa this afternoon, and Pam was fairly comfortable.
But here is some great news that makes a beautiful picture.... her white blood cell count went from relative value 110 to 26 a few days ago to .26, and finally today was .4 Here is a graph that shows the difference:
Pam is feeling a little better this afternoon. She has had another unit of blood and some platelets. They are also continuing with the Lasix to get rid of the fluid on her lungs. She is fairly comfortable and not in respiratory distress, but is still dependent on an oxygen mask.
Had a nice visit with Alyssa this afternoon, and Pam was fairly comfortable.
But here is some great news that makes a beautiful picture.... her white blood cell count went from relative value 110 to 26 a few days ago to .26, and finally today was .4 Here is a graph that shows the difference:
Rough Night
930 AM
Pam was feeling pretty chipper last evening when I left, but had a rough night. Her mouth and gums are sore again. She is weak and miserable. The medical team gave her a unit of platelets, which should help with the mouth and gums. I'm just trying to be here if she needs me, but otherwise I'm just trying to stay out of the way.
Pam was feeling pretty chipper last evening when I left, but had a rough night. Her mouth and gums are sore again. She is weak and miserable. The medical team gave her a unit of platelets, which should help with the mouth and gums. I'm just trying to be here if she needs me, but otherwise I'm just trying to stay out of the way.
Thursday, July 26, 2012
Chemo and Lungs
Good news on 2 fronts:
Pam's respiratory problems are improving steadily, probably because she is finally absorbing the fluid from her lungs with the help of Lasix, commonly known as a "water pill". She isn't exactly "perky", but she is definitely much more comfortable. She still has shortness of breath with a minimal amount of exertion, but I expect that will continue to improve as she gets rid of the excess fluid.
Even more exciting, her white blood cell count went from 110 to 26 two days ago. Today, her count was 2.6; so it is a ten fold decrease in just two days.
Her care here has been excellent: attentive, empathetic, and professional on all counts, so we are very lucky.
Pam's respiratory problems are improving steadily, probably because she is finally absorbing the fluid from her lungs with the help of Lasix, commonly known as a "water pill". She isn't exactly "perky", but she is definitely much more comfortable. She still has shortness of breath with a minimal amount of exertion, but I expect that will continue to improve as she gets rid of the excess fluid.
Even more exciting, her white blood cell count went from 110 to 26 two days ago. Today, her count was 2.6; so it is a ten fold decrease in just two days.
Her care here has been excellent: attentive, empathetic, and professional on all counts, so we are very lucky.
I Forgot the Good News
9:30 AM
Yesterday was tough. Pam is now resting comfortably, but she is exhausted and can hardly hold her eyes open. Jason and Alyssa came for a very brief visit last night. We had to keep it short because of her fatigue, then we went out for dinner and beer afterward. I would have taken a picture of her, but I'm afraid that my own life would be in peril when she found out and regained her strength.
BUT, in all of yesterday's excitement, I failed to share the Good News... her white blood count has gone from a relative value of 110 to 26. (These aren't the exact measurements, just relative values... if you really want to know what the numbers mean, click here: Blood Counts)
Anyway, the important thing to understand is that they would like to get her count down to about .5 from where it started at 110, and she has come a long way. Of course, the treatment is making her sick, but, again, nothing that has not been anticipated. She is getting great care here, I can't thank the hospital staff and her doctors enough.
Yesterday was tough. Pam is now resting comfortably, but she is exhausted and can hardly hold her eyes open. Jason and Alyssa came for a very brief visit last night. We had to keep it short because of her fatigue, then we went out for dinner and beer afterward. I would have taken a picture of her, but I'm afraid that my own life would be in peril when she found out and regained her strength.
BUT, in all of yesterday's excitement, I failed to share the Good News... her white blood count has gone from a relative value of 110 to 26. (These aren't the exact measurements, just relative values... if you really want to know what the numbers mean, click here: Blood Counts)
Anyway, the important thing to understand is that they would like to get her count down to about .5 from where it started at 110, and she has come a long way. Of course, the treatment is making her sick, but, again, nothing that has not been anticipated. She is getting great care here, I can't thank the hospital staff and her doctors enough.
Wednesday, July 25, 2012
Even More Exciting
After the Mariners lost to the Yankees this afternoon, Pam's breathing problems worsened. (Draw your own conclusions... I don't think it was a coincidence.)
Anyway, after a lot of consultation with lord knows how many physicians who look to be about the same age as Doogie Howser, the respiratory problems seem to be under control and Pam is resting comfortably.
Wow, I feel old.
Anyway, after a lot of consultation with lord knows how many physicians who look to be about the same age as Doogie Howser, the respiratory problems seem to be under control and Pam is resting comfortably.
Wow, I feel old.
Things Got Exciting
8:30 AM Pam slept really well last night, thanks to Atavan, but she is still groggy this morning, so I'm getting some work done while she sleeps. She is also talking in her sleep*, from what I can gather, she is dreaming about a decorating project of some sort.
About 10 AM, things got exciting. She started having more difficulty breathing and her oxygen level got pretty low. Her nurse, Judy, did a great job of getting the other nurses to help out, getting respiratory therapy, and her physicians attending to it immediately. In short order, they had her oxygen level back up to normal and Pam was out of distress and resting more comfortably. Unfortunately, she may be developing pneumonia in her right lung, so, she will be on IV antibiotics. She is also receiving platelets and another unit of blood today. These are all things that her oncologist warned us might happen, so nothing unexpected, although it still sucks.
2 PM: Things are under control, still watching her oxygen level closely.
*Quotes from Pam while talking in her sleep:
About 10 AM, things got exciting. She started having more difficulty breathing and her oxygen level got pretty low. Her nurse, Judy, did a great job of getting the other nurses to help out, getting respiratory therapy, and her physicians attending to it immediately. In short order, they had her oxygen level back up to normal and Pam was out of distress and resting more comfortably. Unfortunately, she may be developing pneumonia in her right lung, so, she will be on IV antibiotics. She is also receiving platelets and another unit of blood today. These are all things that her oncologist warned us might happen, so nothing unexpected, although it still sucks.
2 PM: Things are under control, still watching her oxygen level closely.
*Quotes from Pam while talking in her sleep:
- "I think that looks about right."
- "Yes, it is."
- "What do platelets do?"
Tuesday, July 24, 2012
Everything was going smoothly, and then ...
Pam had a really rough night. She was up all night peeing like the proverbial race horse and having a lot of difficulty breathing. So, she asked for no visitors for the rest of the day while we get everything under control.
We have had a collection of a bunch of little things popping up all day long:
Jason and Alyssa visited last night. Had a great time. Pam is so excited about their baby she can hardly stand it!
Nate came up from Eugene to visit this morning. He is relaxing while visiting with his mother in "Nate-like" fashion:
Jim Plymale came by to deliver some flowers (also didn't get the memo), but ...
Jim and Steph's daugher, Andrea, made her the cutest card ever.
We have had a collection of a bunch of little things popping up all day long:
- My bicycle seat was stolen while my bike was locked up in the middle of the day right in the middle of all of the buildings on the hospital campus. Went to a local bike shop and bought a new seat, seat post and some special skewers to keep the seat and tires from being stolen in the future.
- My son called and has a bit of a financial emergency. I need to send him some money via Western Union.
- Saw our neighbors in the hospital hallway... turns out our neighbor Dave's brother is very ill.
- Pam was unexpectedly moved to another room.
- Oh, I almost forgot to add that during a bored/curious moment, I flipped a switch that called a code in Pam's room. That was exciting.
On the other hand...
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| Left to Right: Jason, Alyssa (and Austin?), Pam |
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| Nate Relaxing |
Nate came up from Eugene to visit this morning. He is relaxing while visiting with his mother in "Nate-like" fashion:
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| Flowers from Clinicient |
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| Pam with card from Andrea |
Jim and Steph's daugher, Andrea, made her the cutest card ever.
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| How cute is that? |
Monday, July 23, 2012
We are used to suffering ...
"I'm Feeling Better"*
Keith and Katie came for a visit, which was great. It means a lot to Pam.
But... they obviously didn't get the memo about bringing flowers.
I have a business trip to Arkansas scheduled for this coming week. I was thinking of cancelling, Pam thinks I should go. I really don't want to because if Pam is going to get out of the hospital during rounds of chemo, it would be right around that time. I am going to check with work and see if someone else can make the trip in my place.
*From Monty Python and the Holy Grail
(reproduced with full permission of Pamela M. Crosby)
(reproduced with full permission of Pamela M. Crosby)
Sunday, July 22, 2012
No Flowers, Please
Besides all of that, I don't want her thinking that getting flowers is a normal sort of thing that people do for one another. It would set a bad precedent.
As an alternative, you can just send fresh, crisp one hundred dollar bills to my home address.
Thanks!
First Day of Chemo
8:30 AM
Today will be the first day of chemo, they should start around mid-day. It still seems a little surreal.Pam had a hard time sleeping last night because she had to get up to go to the bathroom frequently. They are "flushing" her kidneys in preparation for the chemo, so that is to be expected.
I can tell she is anxious, because she has been tidying up the room. She is (normally) the most patient person I know, but she is now just a little impatient about little things that she normally wouldn't even mention.
1:15 PM
Judy and Cindy, nurses for today. Everything is hooked up!
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