Friday, February 27, 2015

More About Transplantation if you are interested

I was going to include this section in my previous post about resting, but I thought not everyone might want to know about this so I removed it.  I promised in an early posting to explain more about the subject, so if you want to better understand the type of cancer I have and better understand transplantation (at least a summary of my understanding of it), read on McDuff!

Multiple Myeloma (MM) is a cancer of the plasma cells.  Plasma cells normally help you fight infections, but they do a lot of other things as well.  In MM, the cancer begins to create "fake" plasma cells.  They are imposters; they look like plasma cells (unless you look really closely), but they grow faster than plasma cells and crowd important cells like red blood cells and white cells out of the bone marrow.  Not only that, but they don't do what plasma cells are supposed to do, so you start by having a series or multiple infections over time, anemia, and the other symptoms of myeloma.  Prior to the new generation of treatments that began around 2000, and which are making astounding progress, one major attempt to eliminate the cancer was to give high doses of an older chemotherapy drug called Melphalan.  This drug works by killing all rapidly dividing cells which means it would target the cancer cells.  Unfortunately, there are also other rapidly dividing cells in the body including stem cells, hair follicles, and the cells that line our mouths and digestive tracts.  Stem cells are the cells that create all of our blood cells (at least that is what the ones in the bone marrow do), so if you kill them all off, you have a serious problem -- not only do you no longer have an immune system, you are going to have trouble breathing because you no longer have red blood cells after they die off!

The solution?  Transplantation.  The kind I am going to do is called "autologous" meaning that I am my own donor.  This dramatically increases the chances of survival because there is no "transplant shock" or rejection of donor cells.  So this was the main form of treatment after initial chemotherapy reduced the cancer cells in the body.  The idea is:  remove the young stem cells before they learn to become cancer cells, then kill all remaining cancer cells in the bone marrow, and put the baby stem cells back to grow up and "re-boot" the immune system.  Simple!

This has led to a debate in the MM cancer community -- with the new drugs which work in various other ways, do we even need to do stem cell transplantation any more?  Some patients are opting not to transplant, although almost all the experts I have seen, while arguing that the effect of the new drugs need to be better understood, tend to agree that transplantation is still the major treatment at the point where I am at in my treatment.  So why is there a controversy?  Because there is very little evidence that directly compares stem cell transplantation outcomes to the new drugs.  This was the cause of much anxiety for Patricia and I as we thought through whether or not to do a transplant.  I did a lot of reading and looking for answers along with lots of prayer because transplant is a very difficult process.

When we met with the Bone Marrow Transplant team as part of this process, they showed me a study just published a few months ago that compared (in the right ways) the outcomes of transplant vs. patients who did not have a transplant.  It is important to remember that these studies are expensive and take a lot of time to do.  While the study did not do a direct comparison of the exact same drugs I have been on (Velcade, Revlimid, Dexamethasone or RVD), they did compare transplant to Melphalan, Revlimid, and Prednisone (almost the same thing as Dex), so it is the closest comparison I have seen so far.  The results showed a significant benefit for transplant patients in terms of how long they achieved remission; it also showed the importance of maintenance therapy following transplant to slow down relapse.

I don't want to pop anyone's bubble, but it is also important to realize that, at least right now, we can't cure Myeloma.  It will come back -- the question is when and how long can we live relatively free of it.  For me, the longer that time frame, the better -- the longer I can work, ensure a future for my wife and family, and the better life I can live and contribute, to help others.

This study was very important to me, and along with other considerations -- that I have not yet been ravaged by Myeloma (because we caught it early), and I am fairly young and strong -- it led me to decide to go ahead with the process.  I have had no regrets with that decision so far, although as you know, the process has not been stress free so far!  I was never promised it would be.  But my Bishop gave me a blessing as we started into the chemotherapy that while this process would not be easy or painless, it would be worth it (fighting the cancer).  I feel that I have been blessed greatly so far, and I continue to learn more about life, and to deepen my love for my wife, children, parents, and all of you.  There is more I could talk about related to this study and my thinking, so if you want to know more, let me know, but hopefully now you understand more about the transplant process, and why we  decided to go ahead with it.  I'm sure if you continue to read this blog, you'll learn more details about it!  :)

Resting? What is that?

This blog is to update all of you on a couple of things.

First -- yes, I am feeling better.  I've gaining a bit of energy back and was able to go to work today for a few hours at least and pack some boxes (we are moving offices as a new Classroom Building opens).  I did not do any heavy lifting and Monday is my planned day for getting stuff over there.  I have lots of folks who said they are willing to help and will be there.  I hope we can find a dolly to move the file cabinet!

Second, I should have realized that while I haven't been on chemo now for three weeks (and that feels good let me tell you), effects of the other drugs I was on for the harvesting seem to be still clearing my system.  My hips and back were fairly sore after doing that work at school.

Third, every since I got home, I have crashed in the afternoon with a nap that I recognize now as probably necessary.  I just needed to......well, rest.

Rest is a hard concept for me.  I'm a busy person; I always have been.  I like to get thing done, to see progress, to help others.  My wonderful department chair tells me to rest, and I take her advice seriously, but what can you do while resting?  I don't want to just sit there and do nothing which is why this coming hospitalization might require some adaptation.  It is hard for me to just let my body heal and regain its strength, but my naps have shown me that sometimes I need to learn to listen more to my body.  It is a lesson, I think I will continue need constantly to apply once I am admitted.

Wednesday, February 25, 2015

Home Sweet Home

To close off the "good news" post:  I think I was told that the minimum number of stem cells they try to harvest in order to have a transplant are 10 million.  They called me late on Monday to tell me that they had collected an estimated 12.6 million of those suckers!  So I guess the pain, to quote a fictional Christopher Columbus, was traded for a worthy price.

I just got home recently after staying at my angel-Aunt's house.  She let me stay at her house for a couple of nights which is close to the hospital.  This happened to be very fortunate, because Tuesday night I woke up with a lot of blood on me -- something had happened (pulled a suture?) and the wound had bled.  We got up at 1:30 am and went back to the hospital so they could clean the dressing and check on it.  Back about 3:45 this morning and basically collapsed.  I ended up having to go back once more because there was additional bleeding under the dressing after I got up, although not very much compared with during the night.  We got things cleaned up again.

They tested the line when they were cleaning it today, and it wasn't oozing blood, so I am hoping that I am OK.  I managed to make it home and am glad to be back with my lovely wife, my dogs, and be able to go out into the neighborhood.

We are in a lull period right now -- we meet with the team again next week to be all set up and ready for the transplant which begins on March 9th.  I am praying that the transplant and follow-up go as well as the stem cell harvesting, although that means some real storms to go through.  With my wife beside me, Heavenly Father watching over me, and all of your love, we will get through this.

Tuesday, February 24, 2015

Good news -

The dash after the title of the blog means, hopefully.

We got to 25 liters of stem cells/plasma taken today.  The estimates for that mean that I probably won't have to come back tonight for another injection or tomorrow -- I may be done with collection.  I will know for sure when they call me in a few hours, but for now -- HOORAY!

We have to enjoy our little victories.  :)

As I was in the bathroom washing my hands, waiting to go back and get hooked up to the machine, I looked at my face in the mirror, and I realized that none of the tingling flesh crawling sensations or tremors in my fingers, feet face, and head were visible.  I didn't look too bad looking out from the mirror.  You also could not see the anxiety and concerns I have about the upcoming transplant or thoughts about my future and my family.

It reminded me of the many times that people look shocked when they hear I have cancer.  They inevitably say, "But you look great."  And I think there is a lesson in there.

None of us is what we appear to be on the outside.  Sometimes what is going on inside of us breaks through and becomes visible.  Therapists are more used to this, and our training helps us to notice the small signs of things going on inside, but for the most part, we are all full of complex things -- illnesses, hopes dreams, fears, pain, and faith -- that you can't see from the outside.  For me, it also reminded me of the false separation we make between "physical health" and "mental health".  I have gone through an intensely "medical" experience today, but it doesn't show on the outside just as patients suffering through anxiety, depression, or many other "mental" conditions, and neither does my cancer.

We need to be kinder to each other, to recognize and accept that what we see on the outside is not necessarily a good reflection of what we "get" on the inside.

Anyway, I'm hopeful for a good phone call in a little bit and some more time to rest and prepare for transplant.  My love to you all.

Stem Cell Counts

Just got word -- yesterday, my stem cell counts were 15 (without the Mozobil).  This represents the number of stem cells available in the blood stream for collection.  Today's reading was 115!  Yowza.

It means there is a chance I could be done in one day -- we'll see how it goes.  At the very least, it might mean I am done in two day instead of longer.....yippee!

Let me introduce you to Cedric -- he is from the Red Cross and is taking care of me with the collection.

Stem Cell Collection

February 24, 2015

What's the latest?

We all have our up days and our own days.  Yesterday was a day from hell for me.  The neupogen shots I've been getting to mobilize my blood and stem cells have been doing a cumulative build of pain.  From all recommendations, I've been taking Claritin to help reduce or prevent the pain, but despite that, it got pretty intense on Sunday night to the point that I could barely sleep.  So I went into the clinic with little sleep, fasting, and with a lot of pain.  Arrrrgh.

Yesterday, they also put in a central line -- this was to facilitate the stem cell collection and will be used during the transplant time in the hospital.  Patricia and I went to visit a friend and realized that the location had bled onto my shirt, so we went back to get cleaned up and checked.  Things were fine; we got cleaned up and ready to go.  I ended the day going back to the clinic for another shot to make the stem cells more "slippery" so they could escape out of the bone marrow more easily.

Today has been better.  I slept at last four good hours last night, although it was a bit rocky after that.  I had to get up early today to be at the clinic at 7:15 for blood collection and now I'm on the machine.

I think my new central line with its 3 prongs gives me a kind of hip, modern look -- what do you think?  Or maybe like a weird kind of dreadlocks, but on my chest, not my head?  :)  

I am excited at the thought we might be done with collection today -- everyone here is wishing me luck on that -- although that is not likely.  We'll see how it goes!  

So that's the latest -- signing out from my collection bed.......

Sunday, February 22, 2015

Visiting Me in the Hospital

February 22, 2015

Two blog posts in one day - wow.

If you are interested in visiting me in the hospital, that would be lovely.  I will be admitted, most likely, on March 9th.  According to my case manager, people often feel the worst at the end of the 2nd week, probably March 19-21 or so.  If you can only come on those dates, check this blog or email me at to see how I am feeling?  There are no set visitation hours so you can come when you are available (although 2 am might not be a good time).

The BMT is on the 8th floor of LDS Hospital in Salt Lake City (in the avenues area).  They have free parking!

Keep in mind two major things:  1)  I am sure I will be going up and down on how I feel, how much pain I am in, and (hopefully not) whether or not I have any complications going on; 2) my immune system will be severely compromised.

The following are a set of guidelines handed out by the Bone Marrow Transplant unit (with additional comments of my own).  When I talk about food or flowers or balloons or food -- that doesn't mean I expect you to bring ANY of that.  I just know that it is common for people to bring something when they visit at the hospital.  Your presence and friendship is the main thing I am interested in in any case.

  • March 9th will probably be a busy day as they check me in and start the initial intense chemotherapy.  I will also have a busy day probably on the 12th as they rescue me with my stem cells (put them back into my body; more cancer-talk).  They refer to this as the "2nd birthday", although since I was baptized, I think it should be called my 3rd birthday!  They said people often have some small celebrations that day.  
  • You must wash your hands before you come into my room - don't forget your thumbs (people often forget to wash their thumbs), and the backs of your hands to the wrists.  They probably  have some of those antibacterial gels etc. on the unit you can use.  A good rule is to sing the alphabet song (A, B, C, D, E, F, G......can you hear the melody?) and wash your hands until you finish it.  It doesn't take too long.  
  • I would probably prefer that you don't bring children with you.  I like children!  But they are exposed to many more things at school, church etc. than adults.  They also cannot play in the halls.  
  • If you have been exposed to chicken pox and you have not had chicken pox before, you are restricted from visiting until 21 days after your exposure.  
  • You cannot visit with other patients in their rooms - they don't want us sharing infections with each other.  
  • NO fresh flowers are allowed because live plants often have some degree of mold.  Yuck!  So, cards are nice!  :)  If you decide to send silk or plastic flowers, please make sure they are not packed in moss.  
  • NO latex balloons are allowed.  If you want to send or bring a balloon, mylar can be used.  
  • Food is a bit tricky -- I can't really eat home-made food unless the dietician approves it.  I will be eating mostly food that is processed or cooked thoroughly according to safety standards (no fast food or partially cooked foods).  No medium steaks for me.  No "difficult to clean" raw vegetables like sprouts, broccoli, mushrooms, and no grapes (too bad because I like grapes).  So, processed foods and candy might be acceptable, although please realize they say my tastebuds may be changing, and I may be nauseated, etc.  
  • They also say, due to mouth sores and throat pain, I probably won't be drinking a lot of orange or grapefruit juices and probably cannot eat much citrus.  Similarly, no spicy or really salty foods.  
So, easy, right?  I'll talk more about what will happen, the reasons for transplant, etc. later on.  Thanks for reading through the list! 

Keeping Everyone Informed

Sunday, February 22, 2015

I am not really a blogger.  However, one of the recommendations of my providers is to create a blog or something online as a way to let you all know how things are going rather than trying to deal with multiple questions and trying to keep everyone up to date all the time.

I must admit that sounded like a good idea, particularly with my pending hospitalization coming up.

So, welcome to The Latest blog!  Even coming here shows that you are concerned and want to know how I am doing, which I greatly appreciate.

Important and GREAT point to start off with:  My most recent labs showed my M-spike down to 0.2 which is fantastic.  Of course, normal people's M-spike (reading of monoclonal proteins) is 0, nada.  My spike when I began treatment was 1.7 which is lower than many people who have Multiple Myeloma when they are diagnosed (because we caught it early).  LDS Hospital also told me that my in my bone marrow biopsy, they could not see any cancerous plasma cells.  Wahoo!  So, the treatment has been working very well.  Technically, if I got my M-spike down to 0.17, I would have achieved what they call (cancer-talk) a Very Good Partial Response after my induction (more cancer-talk) chemotherapy.  It is not a Complete response, but it is pretty close.  Dr. Hoda at LDS was certain that we would get my M-spike to 0 as a result of the transplant.  But this information is so last week.

Here is the latest:

  • On Friday, Feb 20th, I started on daily shots of Neupogen (you can look on  Wikipedia for a detailed description).  The purpose of this drug is to stimulate my bone marrow to produce lots of cells including baby stem cells.  Why, you ask?  Good question!
  • Tomorrow, Monday the 23rd, instead of getting my shot down at Utah Valley Regional Medical Center, I will go up to LDS Hospital in SLC to get lab work done and then my shot.  After that is done, they will put in a central line which is essentially a tube that will go into my chest and down to one of the major arteries into my heart (sounds fun -- who wants to sign up?).  The purpose of this is to hook me up to an aphaeresis machine to collect stems cells starting Tuesday and to administer drugs, etc.  We will also leave the central line in for when I am hospitalized.  
  • Monday evening, I will get another shot called Mozobil that is designed to make my stem cells less "sticky" and easier for them to leave the marrow and go into the bloodstream.  The chemistry of this and the medical advances here are really amazing, I will say.
  • Tuesday, I will get my morning Neupogen at LDS Hospital and then get to sit on the aphaeresis machine while they collect my baby stem cells.  We need 10 million of those!  So, hopefully we'll be done in a couple of days, but it can take longer.  Mozobil again at night; rinse and repeat until we hit the goal.  
  • I will be staying in SLC during this procedure with my loving Aunt Or; Uncle Larry has also offered which I greatly appreciate, and I may spend some time at Sandy McGunigall-Smith's home as well.  Thank you very much to each of you for being willing to put up with me while I am getting my stem cells harvested.  And love and kisses (XOXOXO) to my beautiful wife who is my teammate and support on this journey.  We are myeloma's huckleberry!
What does Neupogen do to a person?  Well, your bone marrow goes into overdrive, so bone pain is common as is fatigue, nausea, vomiting, etc.  Claritin is reported to possibly help (as verified by Carine Clark), so I've been taking it, and although I don't feel great and have some bone aches (especially hips, back and BIG headache), I am doing OK.  

What is next?  Once we have harvested 10 million of those little suckers, they need a week to take care of them, clean them up, make sure nothing bad is in them.  That means I am scheduled for admission to the Bone Marrow Team unit on March 9th (Monday).  I'll talk more about that in a future blog or two.  

So, that is the latest!  Feel free to post comments or questions, and I'll do my best to respond.

Note Added 3/7/15:  If you want to follow this blog, I think you have to sign in to your google account, come here and you'll see a "dashboard" link in the upper right corner.  If you click that, I think it will take you to a reading list where you can click on Add and put in the name of this blog and then you will become a follower.  It may let you know when new blogs are posted, but I am not certain of that.....