Heading Toward Health

We had a bit of a mixup, or rather the BMT clinic had a mixup on our appointments, so we ended up going in for the checkup on Friday, not Thursday.  Going in, I have had no significant fevers, vomiting, or other complications or problems.  Patricia is very good at making sure I get out and do some exercise every day which is good for me.  Wednesday was the first day I went for an entire day without a major nap since I went into the hospital.  I did this again yesterday but it was mostly because I could not lay down until it was bed time anyway!  I still need a nap most days, but that is down from 2 a day to 1 a day.  Energy level is slowly coming up -- my sense of humor is coming back.....at least I think it is.

On April 2nd, my Hematocrit (proportion of my blood that consists of red blood cells) was 34% of my cells; yesterday it was 37%.  The bottom end of normal is 41%.  So, still anemic, but moving forward and getting close to normal.  Keep in mind that I have been anemic probably for over a year, so this is a good sign.  4/2 my platelets were at 105 (these help me to stop bleeding), yesterday they were at 155 which falls within the low end of normal range.  On 4/2 my neutrophil count had dropped down to 1.7 after the neupogen wore off; yesterday it was back up to 4.3!!  These are cells that help to develop into the infection fighting parts of the immune system, so this is great.  This is in the middle of the normal range.  Hopefully those will stabilize.

All of that was fantastic news.  My immune system continues to grow and improve, getting me to within the normal range; I haven't seen scores the normal range for some of these counts for probably 6 months or so.  We don't have a current read on the cancer indicators, but we'll get that in a couple of months, maybe earlier.  I also have an appointment now scheduled with my regular oncologist for the end of April.  At that time, I will "officially" become his patient again instead of the BMT's patient.

Doctor Peterson indicated that in their opinion, I had done fantastically well with the transplant, and my results were looking really good.  The next decision we are facing (there seems to always be another decision looming) is whether to do consolidation treatment and/or maintenance treatment.  I have been reading about this, but Dr. Peterson also shared his own ideas about this.  The key thing that is hanging the field up is this:  studies have shown that those who DO go on consolidation and/or maintenance treatment (taking lower doses of chemotherapy after transplant) have a longer period in remission.  However, the same studies also do not show what they call an Overall Survival benefit, meaning even if they were longer in remission, they did not live longer as a group than did those who did not go on maintenance.  He explained that this is partly because they think that going on remission enables the cancer to eventually become resistant to the chemotherapy so that when you relapse, it is more difficult to treat.  So maintenance can give you longer remission, but you are still going through chemo (lower doses, yes), the drugs can actually inhibit your immune system's production of some of the key infection and disease fighting white blood cells, and it more than doubles your risk for developing "secondary cancers", other types of cancers or illnesses.  Lovely, eh?

He thinks that we are in the middle of significant progress and that the next 5-10 years will show even more remarkable results, possibly even a cure.  The goal right now is to make Myeloma a chronic disease that is treatable and not fatal.  So if the transplant can give me 2 years (median) remission, we are that much closer to progress being made and new drugs being available.  However, I suspect, I hope, I will get more, maybe much more, than 2 years since the group that median (or average) is based on includes those with highly aggressive genetics in their myeloma.  Dr. Peterson also described a small group of patients he had personally treated who have been in remission after transplant for 20+ years -- some show signs of the cancer, but it appears to be "paralyzed" - it is not growing or progressing, but has just been sitting there for years.  Of course, the chances are I will not be in that group, but we can hope!  Here's a story to help you understand something of statistics:
A biologist, a chemist, and a statistician went hunting.  They spotted a large buck in the woods.  The Biologist took aim and fired but missed by 6 inches to the left; trying to compensate, the chemist fired  and missed the buck by 6 inches to the right.  The statistician pumped his arms up and down and shouted "We got him!".  

Last news:  here is a photo that is great to see.  The marks on my head are from wearing my hat a lot yesterday, but look at my chest!

No Trifusion Catheter!  I am free at last!  It was there only about 5 weeks, but given the trauma of the first days it was put in (go back and read early blog posts), it is such a relief to have it out.  This was also a potentially high infection path, so that gives me some additional protection.  I am learning to try and move more freely again and will enjoy having some scars to show people and tell them the story of how Patricia attacked me with an ice pick.

So that is the latest.  Thank you all for your love and support.

I can do anything for 10 seconds

So, the latest is somewhat more boring compared with previous posts.  We are heading again to see the BMT tomorrow, to get another blood workup and probably to get my trifusion line removed from my chest.  It will be a pleasure to have this thing gone.  I'll update you all on the results of our visit  once we know them.

It has been a tremendous relief not to be in the hospital, and to be home with actual, comfortable furniture, my wife beside me, and a chance to be around familiar things.  My appetite has mostly returned, although I could not eat a frozen pizza we had cooked because it tasted like vinegar to me!  So, I guess there is still some adjusting going on there.  We gave the pizza to a neighbor, and her kids loved it, so it was me, not the pizza.

If you haven't seen it, I would encourage anyone reading this to take a look at the tremendous documentary by Ken Burns that aired on PBS recently based on the book Cancer:  The Emperor of All Maladies by Siddhartha Mukherjee (he is amazing as well, and I'm sure this book is just stupendous).  It goes over the history of cancer as well as how our understanding (or lack of it) has been tied to the treatments we have used over the years.  It ends by helping us get a glimpse at how complex cancer really is and helping us understand that this is part of the reason it has taken so long to get where we are today.  That said, the progress we have made in the past decade or more is truly amazing.  Although there is no "cure" for most forms of cancer, including Multiple Myeloma, one of the goals right now is to turn the disease from a fatal one into a chronic illness like diabetes or heart disease.  I think we are within striking distance of that goal, and who knows what the future will bring?

To see the film (it is in three parts), go here:
http://video.pbs.org/video/2365450686/

This is the first episode, called "Magic Bullets".  The second is called "The Blind Men and the Elephant", and the last is called "Finding the Achilles heel".

Now to the title of this particular post.  While I was in the hospital, Patricia and I watched the pilot and second episode of a new TV series (we haven't watched it since) called Unbreakable Kimmy Schmidt.  One thing we got out of the show was a mantra she was using to get through difficult things:  I can do anything for 10 seconds (and then repeat.....).  So, Patricia wrote this on the wardrobe panel in my hospital room.  We expanded the 10 seconds to 10 days, but you get the picture.  I kept track of each day I had completed, and it helped me think about how I was making it through my time there.  Here is a picture of the panel:

Sometimes, persistence or endurance means just this -- gritting your teeth and counting to 10.  It is a little harder when it is 10 days, but it still works!  

So, I am grateful for being able to count to 10 twice.  I'm grateful for the advances humanity has made in fighting this terrible Emperor -- I will still benefit for years to come from these advances.  The dedication and perseverance of those working in this field is inspiring.  I am grateful to all of you for your ongoing support and help - trying to do this on my own would be much, much harder.  Hopefully, tomorrow we will have more good news, and I will return home with a healing hole in my chest, but no more tube.  I'll let you know!  

The rising generation

I promised I would give an update after our trip to the BMT (Bone Marrow Transplant) clinic yesterday.  The news was pretty good.  Here it is in table form for the most important counts:
                                                       At discharge      Yesterday (4/2)            Normal range            
Hematocrit (red blood cells):                 26                     34                              45 for men
Platelets                                                  21                   105!                            140-440
Neutrophils (infection fighters)             4.7                    1.7*                            2.2 - 4.8

So, both my red blood cell production (and thus more oxygen and energy) have gone up substantially which is a good sign as ha my platelet count.  I'm not going to bleed out right away!  I still have a ways to go toward the normal range on both, but that is a good move in the right direction.

My neutrophils have dropped significantly, but this was expected.  They were toked up on neupogen and production soared and is now dropping down to more expected levels.  I hope they are stabilizing and should soon hit the normal range.

No transfusions for me, right now, thank you very much!

The PA and the doctor were both pleased with the results and said they were quite good.  I have been able to walk every day with my wife and the dogs except for yesterday (cold, blah, and we were both very tired).  I will try and keep that up -- it seems to really make a difference.

The doctor said something like:  "These are really good results.  They show that your immune system has rebooted and is working to get up to speed.  Your new immune system is like a baby's, though -- it still has a lot to learn about how to fight infections, what they look like", and so forth.

So I've got a nube for an immune system, but it is working hard.  Thus, the mask and avoiding lots of people still.  We don't want to overwhelm it just yet.  It will get a chance to learn and grow, but we want to do that slowly so it is strong enough to do well.  Keep those measles away from me!

The nap attacks are still hitting me, and that is part of the process of maintaining energy through the day.  Today, I laid down just for a "rest", woke up when my wife walked in the room about 30 minutes later, turned over just to get warm, and woke up again about another 35 minutes later.  Whew!  Growing an immune system is hard work.

I will be stopping my Coumadin on Sunday.  They will check me again next Thursday, and I expect that we will remove the trifusion catheter from my chest.  We will then schedule a follow-up appointment with my regular oncologist.  After that hole in my chest heals, I'll be able to do jumping jacks and take showers and have fun!  Now, where to get the energy.......

It will come, my friends and family -- things are looking good.

And that is the latest!  I posted an announcement on my Facebook page about my hospital-neighbor Elena Jakobson.  Please take a look at it.

Bald is Beautiful

I know that losing your hair is usually more difficult for women; so much of women's social image and self-image is tied up with their hair and how they look with it that it is very difficult to lose it.  For men, I think there is less emotion with this, although I'm sure that varies from man to man.

For me, one of the nice side-effects of the transplant is that I barely have to shave (I shaved today, first time in 3 days), and I think my head looks pretty good.  So, bald is beautiful, I say!

I had more energy and felt better this morning, so I think I overdid it a bit.  This afternoon I've been a bit shagged.  But we are moving in a positive direction.  We have a follow-up visit at the BMT clinic on Thursday.  I'll let you know how it is looking.

Here I am today:

And to give you all a reference point (because some have been asking me):

Red Blood Cell Count    Normal range:  42-52    My last score was 26.1 I think?
Platelets                          Normal range:  140-440  My last score was 21 or so, if I recall.
Absolute Neutrophils      Normal range:  2.2 - 4.8     I hit this one out of the park the day after my last neupogen shot, at 4.7  I expect that number has now dropped.  It was at 0 for quite a while.  The 500K threshold I mentioned before would be 0.5 on this scale.

So, I still have a bit of ways to go, but I hope my numbers look better on Thursday.

And that's the latest!

The small energy cup

My best estimate right now is that I gain about 5% in energy each day since I left the hospital, so I have 10% more energy than I did before.  I am hoping this is like compounded interest and keeps growing!  If it does, I can probably retire off of it in a few years!   :)

Having some trouble sleeping at night -- I think I need to adjust my new CPAP and do a few other things.  We'll see how it goes tonight.

However, I am enjoying the beautiful sunlight as it streams into our house through the front door in the morning, the snow on the mountains (although we need more of it), my wife's company, and we had tacos for dinner tonight!  Last time I had tacos was probably six weeks or more ago.  Beats hospital food, let me say.

That said, I have about the strength of a four-year-old, so please do not send your kids over to beat me up just so they can grow their confidence.  I couldn't open a jar today, but I am enjoying my walks.  Temperature is supposed to be VERY warm tomorrow, so we'll walk early and then maybe in the evening cool.  When it gets cold on Thursday, it may be more of a challenge, but I'll be up in SLC again.

We have an appointment on Thursday just to check in and see how things are going.  If it all looks good, then we will probably schedule a time to get the trifusion catheter out of my chest.  A shower with no worries!!  Huzzah!

The little things really do matter.  They are part of the fabric of our lives, the connections we have to each other and to the world around us.  I appreciate them more than ever.

OH!  The title of this post.  Dr. Asch told me (may have said this before) that each day it is like I have a little cup of energy.  It gets slightly bigger each day (thus my 5% estimate), but I have to decide how I will use it.  Will I get excited and burn it all and then spend the rest of the day in bed?  Or will I parse it out to use it as needed while resting in between?  That, as my friend William used to say, is the question.  And although your cup may be bigger than mine right now -- we all have our little cup and decide how we will use it.

I am going to continue the blog for the next several months probably because I'm a narcissist!

In a way, this is my journal of this journey, and I don't want it to be limited to just the worst possible days.  I want to remember, and my children and family to remember, the journey, not just an event of being hospitalized.

So, if you want to stick with me, please do.  I'll be back again, soon.  My love to you all.

Home Sweet Home, Redux

It is official -- I am home.  WAHOO!

We left the hospital around 2 pm yesterday, stopped for some Hatch's chocolates (you gotta have priorities, right?), and headed home.  I will say this first:  every piece of furniture in the house is more comfortable than any furniture in my hospital room!  :)

Patricia has been wonderful in helping me pack and get home.  I did leave a little bit of shampoo and body wash, but otherwise, everything made it back.

I am able to go outside and walk, although I must wear a mask if it gets breezy or dirt is blowing.  I'm still on a low microbial diet so I have to be careful what I eat.  No large dinner parties just yet, and they strongly recommend against being around groups of people at all right now.  Later on, they said I could go out into areas with groups with a mask (yuck but may work out).  So I'll miss church for several weeks yet and no substitute teaching @ UVU.   :)  No visitors for the first few weeks, if you would, but I'll be able to start seeing a few visitors maybe in a few weeks if you're healthy.  We'll have a vat of bleach for you to dump on your head when you come in........

My energy level is about the level of a Snow White dwarf's work environment, but it will get better!

Thank you all for your support and help.

Here's the joke of the day from Larry Hill:

A policeman radios into Headquarters.
"Sarge, is that you?"
"Yes, go ahead."
"We've got a bad case here.  A woman shot her husband when he stepped onto the floor she had just mopped."
"So you've arrested the woman?"
"No, Sarge, the floor is still wet."

Stop -- in the name of love!

Oh yeah, that dates me doesn't it (the title of this post).

This may be fairly short; of course, I'm know for being verbose, so we'll see.

Good news today:  Platelet count was up to 26 on its own -- no more transfusions since the last time I mentioned it which was a while back.  No fevers for 3 days -- HOORAY!  Red blood count slight increase from 24.3 to 24.9.  I could really use more of those suckers to help bring me oxygen and energy.  Last, the neutrophils -- this is what everyone is counting.  They will not release me from the hospital until my neutrophil count is 500.  These are the cells we use to fight infections.  Days ago, they were at 0 -- then up to 100; for the past three days, they jumped up to 300......and stayed there.  Come on, guys!  Rally to the flag.  Today, they were 400.  Getting close!

Dr. Mitchell thought a one-time additional dose of neupogen might avoid the fever complications I've had while stimulating the stem cells enough to hit the 500 mark.  I agree to try it, so we'll see what happens tomorrow.  So far, no fever today.

Summary:  there is a chance that that might release me from my bondage tomorrow!  If there are any complications, or we do NOT hit 500, it might take another day or two.  I'm hoping for tomorrow.  Who's with me?!

Once more into the breech, old friends!  

I'll let you know what happens.  In the meantime if you were planning to visit in the next couple of days -- Stop!  Keep your eyes glued to this blog.  If I go home, I'd be happy to see you, if you are well, sometime in the next few days or weeks.  Just text or call me to let me know you want to come over.  In the meantime, prayers for tomorrow are appreciated.  I'll accept whatever happens, but I'd love to be released from Monte Cristo if I can tomorrow.