Remission!

Great news

Pam is in remission.  Her blood counts are all normal and her bone marrow biopsy came back looking great.

This doesn't mean her treatment is over, far from it, but it does mean we can to onto the next phase. 

Here is how Dr. Weinstein drew it out:

We are done with the Induction Chemo now that Pam is in remission.  Remission is not the same as a cure.  To cure the leukemia, there are 3 options:

• More Chemo for at least 3 more sessions
• Autologous Stem Cell Transplant:  re injection of her own bone marrow cells
• Allogeneic Stem Cell Transplant:  replacement of Pam's bone marrow with someone else's.  The marrow could come from a close relative, or could come from a bone marrow bank.  Obviously, the better match the more likely she would have a successful outcome.

All 3 options involve more chemo.  The Allogeneic Transplant has the best chance of success in the long run, but it also requires treatment for a longer time.  She has an appointment with another oncologist who is the bone marrow transplant expert this coming Thursday to discuss our options.

So, we are not even close to being out of the woods, but at least we have a compass.

Pam is not feeling red-hot, but I expect she will continue to gain strength over the next few days.  Her hair is falling out pretty steadily, but she doesn't look ill.  She is not eating much and she is losing weight with the "toughest diet program ever!"

On to much more trivial matters:  I cancelled a cruise we had planned for November.  Things are just too unpredictable right now.  Luckily, we are going to get a full refund. I am getting back into the swing of things a bit more at work, going into the office every day now.  I have periods of time where I am super productive, others where I can't concentrate at all. I have business trips scheduled to New York and San Diego coming up soon. I had planned on taking Pam to New York with me for her birthday. We are both disappointed about that.  I will be working with our good friend, Creta, in New York, and I was going to take a couple of extra days, but it just won't work out.

Long Awaited Biopsy

Went to the hospital early this morning and the bone marrow biopsy was finally completed under CT guidance.  Easy peasy.  I tried to catch up on some work while waiting in the hospital cafeteria, but the procedure was so quick, I didn't have much of a chance to get anything done. Results on Monday.

Jason's birthday party at the Lucky Lab this evening.

Pam and I are going to sneak away for the weekend and relax a bit. No IVs, no procedures, no hospitals and no appointments. Weeeee!

Why Start Now?

So, another interesting day... at least to me.

Most importantly, Pam is feeling pretty good.  It is still amazing that a person's condition can change this quickly. She was suffering tremendously last week, feeling pretty close to normal this week.  In fact, I think her leukemia may have cured her snoring... she is sleeping soundly and not snoring at all.  Amazing.

She had he first outpatient appointment today to get a bone marrow biopsy.  Since having a biopsy wasn't trying enough, she thought it would be a marvelous idea to go to the DMV to get her driver's license renewed today before her appointment.  She explained to the nice folks at the DMV that she wanted her picture taken with her hat on, because she is self conscious about losing her hair, and, surprisingly, they let her do it.

To prepare for the bone marrow biopsy Dr. Weinstein gave her a prescription for anxiety. She needed it.  She was little Miss Chatty Cathy before we got to the clinic. I have never heard her talk so much about nothing... I finally asked her to take a few deep breaths and take one of those magic pills.  Immediately. I was tempted to ask her to take two pills, but that probably wouldn't have been prudent.

When we arrived at the clinic, Dr. Weinstein was his usual gentle, affable self.  He explained what he was going to do, made sure we both understood, and, after he made sure I wasn't going to feint or something, he allowed me to watch.

The procedure involves numbing a spot over the backside of the pelvic brim, then inserting a large bore needle in to the pelvis to retrieve some bone marrow.  It didn't go well.  In fact, it didn't go. Pam's iliac crest was so tough he couldn't get the needle through it.  He was literally sweating trying to break through and he could not.  His nurse had never seen this happen before.  All Pam got for it was a sore bum.

So, we now have to go to the hospital early tomorrow morning and have the procedure done under guided CT. It is important to get the test done right away.

I told Pam that we shouldn't expect this to go as expected, nothing else has so far.

Looking Sporty

Pam had her first night at home and slept well.  Prior to last night, had not slept well for over a month.  She was very sick before she was finally diagnosed, and no one sleeps well in  a hospital, even if they feel OK.

Sis in law Sandra took her to her first outpatient appointment today and she was very pleased that Dr. Morich was there to greet her.  He was one of our favorite residents in the hospital, and Pam didn't expect to see him again as an outpatient.

She will be having her bone marrow biopsy (finally) tomorrow, and after we get the results, they will decide on the next course of treatment.

New Haircut

My favorite hat

While I was at work today, she decided to cut her hair very short.  It is falling out very rapidly now, so it will make less of a mess.

She tried a few hats on for size.  She has a white Mariner's cap that makes her look sporty instead of sick.

Our little condo is cluttered with all of the stuff that we brought from the hospital.

I have been surprised by well wishes from people that I haven't seen in years.  Very touching.

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...