Home Run

The mystery of Pam feeling so poorly over the past two days has been solved.  She was simply having withdrawl symptoms from the Dilaudid.  She went from having severe, unremitting pain to almost no pain within a day.  As a result, she went from lots of narcotic pain medication to none. So, today, they put her on a very small dose of oxycodone, and she will taper off over the next couple of days.

So, big news:  Home at last!  Discharged from the hospital today.  26 days is a long time.

She will go in for her first outpatient treatment tomorrow, so the second phase of treatment will begin shortly.  Soon, she will get a central venous catheter inserted under her collar bone.  It is a surgical procedure, but it will make future chemotherapy much easier.

A big thank you to all of our good friends and family.  Your prayers, well wishes, card, and phone calls mean a lot to both of us.  Your free beer means a lot to me.  Thank you so much.

Curveball

8 AM

Came to the hospital this morning expecting Pam would tell me how much better she was feeling.  Sadly, that wasn't the case.  She was miserable all night long with diarrhea and she wasn't able to keep her breakfast down this morning.

While we were talking, she had a bit of an emotional melt down. Everything is catching up with her: she is discouraged that she went from OK to miserable again, she is anxious about going home, she doesn't want to feel dependent on anyone for help, but still afraid that she won't get the help she needs after she is discharged. Mostly, she is just exhausted after the rough night.

She also said she is afraid she won't be able to hold her grandbaby.  I melted down myself when she said that.

Medically, everything is looking up. Blood counts are all approaching normal.  She is only on IVs intermittently for antibiotics.  She is eating better and she is not taking any pain medication at all. The diarrhea is probably from the antibiotics and will resolve soon. Her hair is coming out more rapidly now... very minor issue in the scheme of things.  It is just part of the whole journey.

6 PM

She has been sleeping comfortably most of the day now.  Jason and Alyssa will be visiting this evening, and I'm sure she will feel rested by then and seeing them will boost her spirits.

Outside!

Great Day

I slept in until 9 this morning and called Pam at the hospital.  She had a good night!

She was able to eat some cream of wheat with a pat of butter (ick) for breakfast and she was able to eat a bit of lunch today.  Since she is now able to eat and can supplement with Boost, they took her off of the TPN at mid day today.  They also removed the PCA (patient controlled analgesia).  The only IVs left are for antibiotics.

Everyone seems happy that Pam is finally better.   One of her nurses, Danni, at the front desk:




I went to a local bakery and got the nursing staff some cookies this afternoon.  They all thanked me so profusely, it was a little embarassing.  (The great care they gave Pam vs. some fancy cookies doesn't seem like an even trade to me.)


Late this afternoon, she was totally "unhooked" for a while and we took a walk OUTSIDE on the hospital grounds. Per usual, Pam noticed some things that I never would have noticed by myself.



Vertical Garden

There was a vertical garden against one wall that had strawberries, rhubarb, and tomato plants.  There is a hardwood frame, hogwire and landscape felt inside. Make a little X in the landscape felt for your plants.  Very cool.

There are also a bunch of creative bird houses:

So, we are looking on track for getting discharged on Monday. 

More adventures to come.

A Sure Sign

I received a sure sign that Pam is getting better. She called me at work and asked if I could pick up her makeup at home before coming to the hospital this evening. "It would make me feel better" she says.  I can't imagine how or why, but I stopped by the condo on the way back to the hospital and got her makeup as requested.

On to significant, but less reliable signs of her recovery:  Her platelets and red blood cell count are normal.  By tomorrow, her white blood count will more than likely be normal and she will no longer be neutropenic, meaning we will no longer have to wear these silly masks in the hospital room.

She may get out of the hospital within a couple of days.  Possibly Sunday, more likely Monday.  She is both excited and apprehensive.  After all of the rough nights she has had, it is difficult for her to believe that she will improve enough in just a couple of days to be ready to live at home without constant medical care.

She is obviously better... more energetic and less pain..  She is still not eating very much, but she is at least eating a little. She had a little bowl of cream of wheat this morning, 2/3 of a boiled egg and a Boost, some canned pear for lunch, a Boost and a tablespoon of tuna salad for dinner.  Because of her ravenous appetite, they are going to begin to taper her TPN (food in her IV).

They are also going to see if they can begin to decrease her pain meds so she is no longer reliant on the PCA (patient controlled pain medication with a "magic button").  If she can eat a little solid food and supplement her diet with Boost, she should be fine.

We still don't really know about next steps.  She will, finally, get her bone marrow biopsy as an outpatient, and her oncologist will decide on a treatment plan from there.

Some of the great nurses:

Kris

 

Kris is 6 foot 3, played college volleyball.  Great sense of humor.








Carla

Carla is one of the daytime charge nurses.  Never really finishes a sentence, because she is running off to another room to do something.

Sydney

 Sydney came down to take care of Pam when she was in ICU and spilled stuff all over the place when she was changing out Pam's chemo... she always announced herself as "the clumsy nurse" every time we saw her from that time on.






Carly

Carly is her nurse this evening... took care of Pam last night when she had a bad night with all kinds of "bathroom issues". 

Did it all in good humor.

Long Walk

Pam and I took a long walk about 10:30 PM.  Everything was nice and quiet.

The oncology ward, where she has spend most of her time, is on the fourth floor of the hospital.  We walked around the wings on the fourth floor, then went down to the third floor and visited the little chapel. I also showed her the ICU waiting room on the third floor where I spent a lot of time.  We walked the length of the hospital on the third floor, down the elevator to the first floor where I showed her the cafeteria and where I park my bike.

The cafeteria was closed, but one of the hospital workers passing us in the hall thought we were looking for something to eat.  "Are you looking for the cafeteria?"  When we answered no, we were just walking, she said... "Oh, I was just wondering, I just went to the store across the street and I have a banana."  Very touching.

I know this is the most boring travelogue you have ever heard, but it was exiciting to us.

So, she is walking and eating, a little.  Blood counts are improving and are almost normal.  We just need to get adequate white blood cells and her pain under control and she can come home.

Turned a Corner?

I hate to say it, but I think we may have turned a corner. Pam's blood counts are coming back, and it is obvious that she has more energy.

Her hair is beginning to fall out pretty rapidly now, but Alyssa came in and cut her Mom's hair, so it won't be so much of a mess. I hate to admit it, because I love long hair, but it is very cute.

Here is Pam hamming it up with her oldest friend, Joni.  I don't really understand the hand gestures.

Two Score Days

20 days since being admitted
10 days since the end of Round 1 of Chemo

Pam's blood count may be starting to improve.  Her white blood cell count nudged up today just slightly.  After the chemo, her lowest level was .1 and she is now up to .3.  This is a very small change, and it might not even be significant, time will tell.

No blood or platelets today.  3 walks: One with son Nate, another with daughter Alyssa, and once this evening with me.

Her mouth and throat pain are still the biggest problem symptomatically.  The dilaudid helps, but there are times when even that isn't enough.  As her white count begins to improve, the mouth and throat pain will resolve.

Charlotte, CNA

Sara, RN

Pam wants me to take pictures of all of the people that are taking care of her.  This is Sara and Charlotte:

Brother Mike
Dad Don

Sis In Law Sandra

Mike, Sandra and Don visited this evening.











Pam Reviewing the Blog

Pam was feeling good enough after everyone left for the evening that she took a look at this blog herself.

She didn't think my photography was very flattering.  I reminded her that she has cancer, and everyone tells me how good she looks in the pictures.

Maculo my Papular

Feels like a bit of a roller coaster.  Pam was in a lot of pain this morning and very discouraged.  She developed laryngitis, and it was very painful for her to even try to speak, so she was writing things down.  I told her that being able to get the last word was nice, but wasn't really worth all of this to me.

I was planning on going into the office this afternoon, but she asked me if it was possible for me to stick around. By late this afternoon, she was in pretty good spirits and her pain had gone from an "8" to a "4" on a 10 point scale.  (Corresponds to a "12" and "11.5" respectively, for me.)

She has also developed a rash again on the back of her legs and on her back and stomach.  All of the physicians here seeem to find it very interesting.  In fact, about 9 of them donned masks and descended on her room to take a look. The group was led by an elderly distinguished gentleman who walks with a cane. He is obviously highly respected by the others which include Pam's internal medicine physician, a hospitalist, and a gaggle of residents.  The elderly physician stated that there were no "apparent vesicles" and that it didn't appear to be "Sweet's Syndrome".  Their joint conclusion is that it is a "maculo-papular rash" of unknown origin. But, the important part is that they don't believe it is a sign of some sort of systemic problem or serious complication.

Pam told them that if they discover this is some sort of new disease, they should name it after her. They all laughed. I was very proud of myself, because I told Pam before everyone descended on the room that all I remember from way back when about skin disorders in pathology class in PT school was that everything seemed to be a "maculo-papular rash".

Nate indicating with sign language that he is smiling

Pam's son, Nate, took her on two walks around the hospital today, which I think was good for both of them.

Oh, Behave!

Pam in the morning

Austin Powers Teeth

Pam had a great day nearly all day yesterday, until about 9 PM, when a bunch of tissue started sloughing off of the roof of her mouth and throat, causing bleeding. 

Because of the bleeding and drainage into her throat, she had trouble sleeping last night.  This morning, she had a bunch of gauze in her mouth and she looked like Austin Powers.






Pam Lips

Lips

She is having a lot of mouth pain again this evening.  Her lips are swelling and she is having trouble talking.

I tell her that some people pay a lot of money for lip enhancement...

Bone Marrow Biopsy

The biopsy is being postponed until Pam begins to regenerate some blood cells on her own.  Her white blood count is still super low, .011, meaning the chemo did it's job.


I had an early morning phone conference, came to the hospital for a couple of hours this morning, and went to the office this afternoon. It is about 7 in the evening now, and Pam is sleeping, although she is keeping her mouth closed (and not snoring), which is very unusual for her.

By about 10 PM, she is finally feeling comfortable. Had a nice talk, and I was able to coast home.

Tomorrow will be another adventure.

No Need for a Thesaurus

3 PM

Yay!!  A good day! 

Pam had a good night's sleep last night, and her mouth and throat are definitely BETTER!!  As a side benefit, I don't have to think of new way to say that she feels miserable in this blog.   I was just about to resort to a thesaurus. (Remember, it is all about me.)

Pam, Austin, and Alyssa

Jason and Alyssa (and Austin) visited this afternoon and we went out to a great lunch. 


Joni, Pam's friend since childhood, came by for a visit and took Pam for a walk around the hospital.


Anxious for the bone marrow biopsy sometime tomorrow.

The Rolling Tannenbaum

1:30 PM

Rolling the Christmas Tree

This is getting a little repetitive...  I'm running out of ways to say Pam had a rough night and her mouth and throat are extremely painful. When I first came to the hospital early this morning, she was pretty miserable. 

After a few hours, she perked up and her mouth and throat were improved, and we took a pretty long walk around the hospital together. 

Of course, she has to walk with her Christmas Tree:

Mouth Suction

Since she can't brush her teeth, about the best we can do it have her gargle with saline and use suction to get rid of it, instead of spitting.  There may be (keep your fingers crossed), some slight improvement in her mouth this afternoon.


Sounds like she may have her bone marrow biopsy on Monday...



Quiet on the Set!

2:00 PM

I am actually having a productive day.  I have finished a number of articles and videos for the Clinicient help website, so I'm feeling pretty good.  Pam is sleeping while I'm working on the website.  I tell her that her snoring is barely audible in my videos.  For your amusement, see if you can hear Pam snoring in the background in one of my "productions" that I did today in the hospital while Pam was sleeping:  Place of Service Scheduling

5:30 PM

Dr. Weinstein has started Pam on Total Parenteral Nutrition (TPN), simply meaning that she can get all of her nutrition from her PICC line.  He told her that she doesn't even need to worry about eating for now.  She was very relieved, because eating and swallowing is so painful. We have also found that gargling with plain saline solution, then suctioning it out (rather than spitting) seems to work about as well as anything for easing her mouth and throat soreness.

Another day in the hospital is over.  I continue to be very thankful to all of our friends and family and grateful for the great care Pam is receiving.

Matt and Patti

8:30 AM

Pam had a pretty rough morning, lots of nausea and vomiting.  But good news:  her liver function tests are improving and her jaundice should improve over the next few days.

11:30 AM

We had a great visit from Pam's old friends, Matt and Patti, who are visiting from LA.  It really lifted Pam's spirits.

She was pretty tired afterward, so she has been dozing, while her brother Mark and I chat quietly.

Grace

11:15 PM

Long day today.  Pam is still struggling with the mouth and throat pain. The switch to dilaudid doesn't seem to make much of a difference. It is still painful for her to swallow, swish, chew, talk, breathe through her mouth, or make a face. If this one symptom would get better, it would make a tremendous difference. Her nurses and physicians are taking this seriously and trying to get it under control, but it is the one thing that has plagued her from the beginning of all of this and it doesn't seem to improve.

I went to the office part of the day today and I missed the oncologist for the first time since this whole thing started.  But, Pam was awake and alert during his visit, and there isn't anything new to report.

Sandra, Don, Mike, Bonnie and Pam
(They are actually smiling, but it is hard to tell)

Pam's childhood friend, Joni visited today.  They started getting into "chat mode", so I excused myself and got something to eat while they enjoyed each other's company.  Later her parents and Mike and Sandra stopped in. Here is a picture of the whole gang.

Alyssa visited a little later on.  It is hard to believe, but she looks a little more pregnant every day. (Brings to mind some sage advice from me to all men:  I have learned to never, ever, ever ask any woman, ever, if they are pregnant.  Ever. It can end very badly and it doesn't really matter if they are pregnant when you ask them this question or not.  Trust me. Don't do it. Ever.)

Back to our main topic: Pam's family is going to start rotating through the hospital Mon-Fri afternoons.  I'll work from home and the hospital in the mornings, go to the office in the afternoon, and back to the hospital in the evening. I am really lucky I can do some of my work remotely and that I work for such a great company.  I'm sure Pam will enjoy being with her family some more, and it will be good for her to get me out of her hair.

She handles all of this with such honesty and grace, it is really hard for me to describe. I told her today how much I admire her grace and she looked at me like I was a space alien with a third eye.  I don't really think she understands what I mean, because it comes so naturally for her.  One more quality for me to emulate.

Morphine to Dilaudid

1:15 PM

Still no relief from the mouth and throat pain. Pam is talking a little funny, just trying to keep it from hurting.  They switched the pain pump medication from morphine to dilaudid...the morphine was not touching her oral pain.  So, we'll see.  I am grateful that they are taking the pain management seriously. 

She was able to choke down a couple of bites of mac and cheese that was cooled to room temperature.  They have increased her IV fluids so she doesn't have to drink water if it is too painful for her.

Jaundice is about the same.

I went into work again this morning for one meeting. Naturally, everyone asks how Pam is doing.

Pam's family is going to start coming in on a schedule every weekday afternoon, which will be a great help. I am going to start going into work in the afternoons. She no longer needs to be watched constantly, but I still think it is a good idea for someone to be around.

Jason and Alyssa will probably be visiting this afternoon. Mike, Sandra, Don and Bonnie this evening.

So it goes...

Mouth, Liver, and Gelato

7:45 PM

Kind of old news, but Pam's mouth and throat are still extremely painful.  She is still having a low grade fever, and no one is really sure of the source. Even with the pain pump, she is still having a lot of pain.

An infectious disease specialist consulted with Dr. Weinstein today and has changed her antibiotics and ordered some blood cultures. The results from the CT scan of her liver did not indicate anything abnormal, but, there is obviously something going on...

Pam's son and daughter visited today, and her parents visited this evening and took me out to dinner.  (Amazing how many free dinners I am getting out of this whole adventure, by the way.)  After dinner, we bought Pam a small gelato.  It tasted good to her, and she ate a little, but she urped it back up.  I told her that it was a perfectly good gelato and it seemed like a waste.

As for me, I went into work this afternoon and made a guest appearance.  Went to a meeting and was actually paying some attention for about an hour, then excused myself to get back to the hospital.  I am going to start coming into the office a little more regularly and working from home some more as time goes on.

Stay tuned for our next exciting episode....

Pam vs. the Mouth Sore Monster

or

Better to Have a Liver than Be One 

Pain Pump

10 AM

Pam's mouth and throat continue to give her a lot of pain.  She is now using a self administered "pain pump", so she can give herself a little dose of morphine by pushing a button. This is pretty common for pain management these days.  It is more effective than waiting for a nurse to administer medication, and, interestingly, people tend to use less narcotic medication this way.  (By the way, you can't overdose yourself... the pump will only allow a certain maximum amount of medication for every push of the button, and only so much medication in a certain amount of time.)

She is only on oxygen when sleeping, but she has a little more jaundice today.  Her physicians are aware of it, but I will make sure to ask Dr. Morich about this when he makes his rounds this morning.

She is really looking forward to visiting with her good friends Matt and Patti on Friday, but right now, she is sleeping.  Just as I typed this, she opened her eyes and pushed her "pain button". 

I stayed home a little longer this morning and picked up after myself... turns out that I can be quite a slob when living alone.

Son Nate is coming up from Eugene to visit and daughter Alyssa is going to be in this afternoon.  I am going to go into work for a little bit this afternoon. Parents Don and Bonnie will be stopping by late in the afternooon.

I am going to make an appearance at work this afternoon when Alyssa is here in the hospital.  I will probably go to one meeting, answer some questions, and get out of there as quickly as possible.

Pam has been meaning to send a thank you note to her primary care doctor who caught this in the first place.  She just called and I told her how grateful Pam is that she took the time to listen and got the blood count done which lead to the diagnosis.

So it goes...

The Eidems Were Here

745 PM

Mike, Bonnie, and Don
Funny how everyone looks better with a mask

Pam's parents, Don and Bonnie; brother Mike and his wife Sandra; and nephew Toby visited this evening. It was REALLY great for Pam to be able to see everyone, and it was a great relief to me that the timing finally worked out well.

War Stories

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

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.

Looking and Feeling Better
(the flowers are fake)

She looks good, doesn't she??








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

Tables are turned... she has to wear a mask in the hallway

We were finally able to take a walk around again this afternoon. Notice that she is not using any oxygen! Big change from a few days ago when she couldn't even sit up.

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 ....

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

Nice Card from Jordan

Pam has been getting a lot of cards from all of our great friends and family.

Here she is with a great card from Jordan, her brother Mike's granddaughter:

Our "Back Yard"

 I rode my bike home to pick up some lotions, potions, and notions that Pam needs now that she is out of CCU.  Our great neighbors, Dave and Barb, have been taking care of Pam's plants and wanted to make sure that I took a picture of the tomato crop.

Pam's Tomato Plant

Pam's Tomato Crop