Sunday, December 6, 2015

The Other Side of the Tunnel

Boy, looking at the date, it has really been a while since I have posted.  Sorry about that, everyone. In case I don't get back to this real soon, Merry Christmas!

Before I get into my musings, let me update everyone:

  • No significant change in my cancer readings -- hooray!  It moves slightly up and down, but it is holding remarkably steady. It is like there is a stalemate going on in the battle between my immune system and the cancer (like the trenches in WWI?). Whatever it is, I'll take it. 
  • Because of the stalemate, I am chemo free. My department chair and I were trying to come up with words to a Christmas song, something like:  "I'm not getting chemo for Christmas!  Mommy and Daddy are glad.  I'm not getting chemo for Christmas. 'Cause Christmas is no  time to be sad."  Ok, it is a work in progress!  But that is a real blessing.
  • My blood results are still not that great. My neutrophils, the ones that fight bacterial infections, have sometimes been up past the border in the bottom range of normal, but most of the others are hovering not too far below the bottom end of the normal range. The good news is that while they are low, they are not terribly low (as in need transfusions low). The doctor still calls me "immuno-compromised", but he said my wife could probably stab me, and I would not bleed out, so that is something!  Because of this and getting sick twice in the past few weeks, I decided I have to keep my mask on at church and in many of my meetings on campus and be more cautious.  Here is a picture from Wikipedia of Neutrophils: 

  • I feel a LOT better than I did after my transplant (8+ months ago) in terms of my energy levels, ability to concentrate, etc.  However, my energy levels are still low.  Yesterday, we went out to dinner for our anniversary and then to the mall to look for some stocking stuffers. We left there and came home about 8 pm. I was pretty much wasted, and I should have told my wife I needed to leave earlier. It is hard to do that, and sometimes I am burning reserves and don't know it until I "hit the wall".  So, I am still walking, I've been working, etc. all of which is a big improvement. I'd like to think I can keep getting better, but it has been 8 1/2 months.  We'll see.  
  • We got to do some of our bucket list!  Because I am teaching online, I was able to stay in touch with students and manage my classes from a distance. We went out to California to see my son  Ben and his fiancĂ©e, Sonal. We enjoyed that and went with them to see Yosemite National Park. UH-mazing. I really enjoyed it and being with family. I stayed for a conference there in San Francisco. Two weeks later, my wife and I flew out to Denver to see her family because of a true miracle event: a funeral of her uncle Roger Nielson who died at the age of 22 in World War II at Tarawa. If you don't know much about Tarawa, it was one of the bloodiest battles of the Pacific Theatre in the war. Decades ago, Patricia's grandmother had received word first that her son was missing and then that he was presumed dead. However, she was later informed that they could not locate the body. That was the way it stayed for a long time; my wife thought he had been killed trying to get on the beach and his body was lost at sea. However, just over a decade ago, an event occurred that ultimately led to History Flight (a non-profit now working with the State Department and the military) discovering the remains of her Uncle Roger and 34 other US Marines who were killed at Tarawa. His DNA was matched to her surviving Uncle Cory, and he was brought home to Denver to be buried at Ft. Logan Cemetery.  It was quite touching, and we all feel very grateful to History Flight for the work they are doing. 
  • Unfortunately, we have not yet had a chance to take down a terrorist.  We are working on the other bucket list items.  
  • Our sons are doing very well. Ben is working hard at his law firm in California and Wesley is really enjoying his time in his MFA program in Florida. He will be working right up until Christmas, so we won't get to see him here, but we are thinking of flying out there in the not distant future. Ben and Sonal will be getting married in July, so we are planning to be there. Hopefully, I will STILL not be on chemo and can enjoy the celebration. 
That's the latest!  Now on the musings -- click away if you don't want to hear them!  Last chance!.......

Last time I wrote about the uncertainty that comes with cancer and the anxiety that goes with it. We have had several real blessings in our life recently that have enabled us to pay off our house which has really reduced some of that significantly: I know that we have a place to live no matter what happens. The apparent stability of the cancer right now has been another blessing in that regard - it gives us a window of time to enjoy life and do some of the things I've mentioned above.  But that uncertainty is not gone, although it is reduced.  I was thinking yesterday that it is like stumbling down a long very dark tunnel with a flashlight whose batteries are running out - you can only see a little ways ahead and sometimes even that is murky.  

My metaphor here may become strained, but to me, every tunnel also has another side where the light is still shining. For me, I have been thinking that gratitude is part of what helps me keep walking; I am grateful for the time I have had on the earth, for this chance to be with family and my wife, for this Christmas that I can have to enjoy without chemotherapy. I am very grateful to my doctor who found the cancer early and has given me this time - my wife and I were speculating on where we would be now if he had not found it. (Shudder). I am grateful to my oncologist who listens to us, who is truly concerned for not only my well being, but our quality of life. I am grateful to all of you for your support and expressions of love and prayers. Most of all, I am grateful for my wife who has been staunch and unflagging and at times irritatingly optimistic about everything going on and whom I love dearly, and for God who watches over me. In many ways, I think that gratitude is the conduit, at least for me, that strengthens my faith and that brings the hope that helps to balance that uncertainty. 

Until next time!  

Sunday, September 27, 2015

Through a Glass Darkly

I was musing the past couple of days that I am hard upon a six-month anniversary of my stem cell transplant.  I have been out now for all that time -- a really good thing!  I have not had to return to the hospital and although I have had periods where I did not feel well due to small colds and such (that lasted much longer than my wife's!), but overall I have felt pretty good. I am trying hard to stay healthy, to take my protective medications and wear my mask in large gatherings, to exercise, etc.  Further, I have been able to work although not at the pace that I used to.  I have been blessed with this extra time.

Yet, this is also the curse. I have discovered that the clock never stops ticking in my head. My wife and I have committed to spending some of our time to work on our "bucket list", including a short visit to Yosemite and a visit with our oldest son if possible at the end of October ahead of a conference I am planning to go to, as well as some other side trips. These moments are precious and valuable....but I have no idea how I will feel. Will I be on chemo? Will I not? (hopefully!) When will I start bone treatments to strengthen my bones? Is the cancer progressing?  How quickly?  The answers to any and all of these questions are agonizingly difficult to get. We hope to know in the next month, maybe two, if the cancer is stable and fluctuating around 0.5 but there is a chance it is slowly going up, and at some point we will need to take action again.

So this is a part of cancer, that I don't think gets talked about as much. The pain, the suffering, the drive to stay motivated, drawing closer to others and to God - those are fairly well known by most people. But the gnawing stress of uncertainty has never really gone away since my diagnosis. The anniversary of that event is also upon me or has just passed - I didn't really mark it on the calendar.  I started chemo in October last year, so I was diagnosed several weeks before that after all of the testing was done. It's not really an anniversary I want to celebrate, at least not at this point.  :)

Uncertainty or not, nothing is to be gained by sitting still. I have some time now, so I will love my wife, spend time with my friends and neighbors, and enjoy my time at my work. I thank my Heavenly Father for His love and support, and I thank all of you for your ongoing prayers and love. No matter what the future brings, or when it brings it, I want to know and feel good about the journey I have made.

Sunday, September 13, 2015

No News is Good News

Update 9/13/15   -- all odd numbers!

I have been meaning to post an update for a while now, but things get busy, so this blog contains two sets of musings.

The first is about my friend, Ian Sorensen. I initially met Ian, I think, as an Assistant Professor of Developmental Math when he came to work at UVU.  I was directing the Faculty Center for Teaching Excellence at the time, and so I was involved with the new faculty. Ian is the kind of person that comes across immediately as warm, caring, friendly, and thoughtful. We enjoyed our interactions, and I learned more about him including his years of service as a Naval aviator. He participated in many of our events, and we had many discussions about how to improve and enhance student learning. He told me that he was going to work on his doctorate, which I encouraged. He was also an LDS Bishop of his ward, a position I thought he was well suited for.

I bring this up because months ago when I was not at school and was in the middle of preparing and then going through the transplant, he called me or sent me an email. I don't fully remember the sequence of events or exactly what happened because my brain was muddled, and I was in the middle of all that stuff going on. In any case, Ian got in contact with me because he heard that I had cancer and that I was going through a stem cell transplant. He shared with me that he had recently been diagnosed with, I think, Acute Lymphoblastic Leukemia (ALL). I shared my sorrow that this terrible thing had happened to him. He had questions about transplant, the procedures, what I thought of the LDS Transplant Team (he was trying to decide between LDS and Huntsman for his transplant). I shared my thoughts with him, and we agreed to keep in touch. I don't remember exactly when he was going to go in for his transplant, but I'm sure it was after mine.

After I got out and started recovering and trying to get back into a more normal semblance of life, I realized I had not heard back from him. I sent him an email on June 30th asking him how things were going, but I never got a reply. I was concerned and was going to follow up when I was told at work that he has passed away on August 20th. He had gone in for a donor transplant; apparently the transplant did help with the Leukemia, but his Graft vs. Host disease really became virulent shortly after his transplant, and ultimately it took his life. Ian was two years younger than in Peace, Ian and may the Lord comfort your family.

Second set of musings:  His tragedy also made my wife and I more set against the possibility, at least at this point, of a donor transplant for me. As we have researched this option, it appears that for Myeloma, the success rate is unclear; many individuals go through the hell of that transplant and then instead of the donor cells totally killing the cancer, some of their own cells come back, and they live with mosaicism, meaning they have two genetic patterns in their bone marrow -- their own, and that of the donor. This creates an ongoing war of Graft vs. Host that can last for years, even a decade or more.  It can also prove fatal as was true for Ian. We have also looked over clinical trials for Myeloma running in SLC and for now have decide to wait on those. There is only one trial that I am still pondering slightly, but most of them are dosage trials, and I am not at the point where I think that would be helpful to me.

But, as my title for this blog suggests, not all is bad news.  We had our monthly appointment with Dr. Wallentine this past Friday. I had gone in earlier for my blood tests to try and make sure we had all of the data, but we were still missing the M-spike information - (grumble, grumble, grumble, ....laboratory....grumble). The results we did have to go over seem to indicate that the cancer is in a holding pattern; it is stable. At least it has been so for the past few months. There is no indication in the current tests that it is doing significant damage to me right at the moment. That is a real blessing. So we are going to continue to postpone chemotherapy for now. We are in "wait and see mode". Most of my blood counts are still low (white, red, hematocrit, platelets), although my neutrophils are in the low end of normal.  Wahoo!

So, because of persistent anemia, I'm still tired by early to late afternoon, still a bit weak, etc. but some of that is because I am still recovering from transplant. Also, please don't stab me with a knife or sword because my platelets are low!

We may start with Zometa, a medication that is often used with osteoporosis patients to strengthen my bones now while they are not being aggressively attacked, in the near future. We don't know how long this pause stage will last, but we are grateful for it. I am able to get work done and keep contributing, and that is a very valuable thing. I just wish I could eat sushi.......   :)

That's the latest.

Wednesday, August 12, 2015

The Disappointment

In my last blog post, I described how we were waiting to get the results of more recent labs and to meet with the Bone Marrow Team up in SLC.  Well, we did both.  Two weeks ago today, we met with the BMT  my (very late) 100 day checkup.

Doctor Ash did not try to beat around the bush.  She started out by saying that she had some bad news.  Just the day before I had seen the latest posting online of my Provo lab results, but I was hoping there was a mistake or perhaps I was not understanding the context.  That's not what she said.

So, to give you all some context. The M-spike is a lab result that shows the level of abnormal (cancerous) protein in the blood.  Normal people's score is 0, none.  I was diagnosed when it was 1.7 (fairly low compared to some other people we've spoken to).  After my rounds of chemotherapy, it dropped (good news), and it was 0.2 just before my stem cell transplant.  The most recent results available at the time we met the BMT was 0.6.  This means that the cancer is back and growing.
All I could think was:

Patricia told me after the meeting that she wanted to slap the doctor across the face and tell her, "Stop talking!"  It was a difficult thing to hear.  The lab result that shows the presence of other proteins that can damage the kidneys were also way higher than normal. She said that the team believed that my cancer was "refractory", meaning unresponsive, to the chemotherapy that was used in the hospital.  In other words, I went through that, and it did succeed in killing my immune system, but it didn't kill the cancer.  Again, I thought:

So we've had a hard couple of weeks adapting to the news.  We met with our oncologist yesterday.  He was also a bit disheartened.  We discussed options including the possibility of a donor stem cell transplant; this is a fairly effective treatment for some other conditions (such as Non-Hodgkins Lymphoma), but he said he would not recommend it for Multiple Myeloma -- too risky with mortality rates around 20-30% and the evidence is not clear that the gains for many are worth the risk.  Some people have done well with it, but that is apparently not the norm.  We discussed participating in a clinical trial with some of the new treatments that are coming out and resuming chemotherapy at home, with new, updated drugs.  We are taking a month to do some research then we'll meet and decide what to do.  

So -- thank you for your prayers and support.  Please keep them coming.  We'll post more when we know what we are doing. There are some new treatments and opportunities.  I hope to be bothering all of you for some time yet.  

Sunday, July 5, 2015

The milestone

Yesterday, Saturday marked day 98 from my leaving the hospital after my transplant, if I am counting correctly!  When we were at the hospital, they told us we would have a last meeting marking day 100, or the milestone for when they no longer would have any input on our case and it would all be back to  our oncologist.

We got a phone call from Dr. Wallentine's (the hematologist/oncologist) office saying that the hospital had called, and we needed to get all the lab work done so they can review it.  So this means going through the list of things again including lots of blood work and labs, a 24-hour urine sample, and my favorite -- the bone marrow biopsy (love that procedure).  Some of the labs take time, as does the biopsy because the pathologist has to do it to count the number of cancer cells.  So this week will probably be fairly busy taking care of this type of stuff.  Then LDS Hospital will review all of it and make some recommendations to Dr. Wallentine.  Apparently, they are saying that we don't need to drive up there for a meeting which seems both good and bad.

Good because that is a long drive with traffic and wipes out much of a day.  Bad because we won't have as much of a chance to say good-bye and to hear their recommendations directly.  Patricia and I are talking about whether we want to request a final meeting.

People are telling me I am looking good, that my color is better, etc.  I am thankful for that and grateful that I am able to get out and ride my bike and pull a few weeds (with gloves and a mask on). I'm accelerating work on my fall courses and my book, and working part-time at home and at school. So things are better than they have been for months.

But as I told someone yesterday, "Cancer has a way of making one cautious."  Yes, I really do hope that I am doing better.  I am looking forward to continued months of no chemotherapy as we monitor the cancer and make sure it is quiet.  At the same time, part of my brain is hiding in the dark closet shouting "Be careful! Things are dangerous out there!"  Maybe this is part of the shock of diagnosis still lingering, I don't know.

What I do know is that life is precious.  Family is precious.  We are given wonderful blessings in this world to serve others, to know love and joy, to learn, and to face our fears; we have the chance to come to know God in his mercy and kindness during the worst moments we face....and He is there.  And so are all of you -- thank you again for your ongoing support and kindnesses.

Let's see what the week brings.

Sunday, May 24, 2015

56 Days and Counting

Boy, I know I have been meaning to update my blog, but I didn't realize so much time has gone by.  Today is my 57th day since I left the hospital.  We are more than halfway to the "milestone" 100 day checkup when we'll go back up to SLC for a final visit with the Transplant Unit.  In the meantime, I'm back to working with my local oncologist.  Some of you have still been sending me a joke of the day which I appreciate!  :)

As of about a month ago, my white blood cells were staying in normal range -- yes!  My red blood cells and platelets were below normal, but not by too much, so that is looking pretty good.  We still won't know about how the cancer is doing until we do a checkup in about 6-7 more weeks.

Overall, things are going pretty well:  No naps, walking around 2.5 - 3 miles, five times a week, and working part-time from home.  I'm making progress on my major projects (designing my online Abnormal Psych course and working on my book), and I can go to the store etc. either when they aren't busy or with a mask.  I'm going to ask the doctor about masks when I go to visit again this week.  I still can't get in the dirt; my wife, bless her, is doing the outside work this spring and summer from planting, moving compost, etc.

Speaking of projects -- I am trying to build wooden tomato cages for my wife to put in the garden.  Since I suppose wood does not have loads of bacteria or mold in it, I can work with it, but I am doing this in the garage with my mask on.  Loads of fun!  Both this project and the walking, though, have taught me something.  With exceptions, I feel like I am trying to resume a "normal" life; however, the swelling of my feet and ankles, my tiredness the next day, and ongoing aches and pains tells me that I think that I am more ready for things than sometimes I am.  At least I think that is what they are telling me.  I feel pretty good, so I assume I can do normal things, but I am finding out that I am not quite back to normal yet.  I think it will come, but I've had to cut back on some of the walking (not quite as far) and trying to get some rest in, and I may not be able to cut as much lumber in a day as I thought I would.

I think it is an ongoing issue of adjustment.  But that is what all of life is, right?  We all have to adjust to the things that come our way and learn how to interact the best way we know how.  Thank you again for your love and support.  As my friend Buzz likes to say:  To Infinity and Beyond!

Saturday, April 11, 2015

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 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.

Wednesday, April 8, 2015

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:

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!  

Friday, April 3, 2015

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.

Tuesday, March 31, 2015

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!

Monday, March 30, 2015

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.

Sunday, March 29, 2015

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."

Friday, March 27, 2015

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.

Tuesday, March 24, 2015

Two rough days

Well, it has been hard to write much in the past two days.  Today is day +12, and it is a monumentous one in many ways.

But going back to Day 10 (can you hear the Tardis whooshing?).......

For the past couple of days, starting on that day, I developed a fairly serious fever going up to 39.8 or so C which is about 103.6 Fahrenheit [Note: It went a bit higher later on into the 104 range].  They don't even "count" it as a fever if it is below 101 degrees.  Some of you have probably had fevers that high, and it fries your brain.  I felt like those old anti-drug adds:  this is your brain on drugs.  It also suppressed my appetite which was already weak, so that even though we were controlling the nausea, I still didn't want to eat.

To try and make sure they got on top of this quickly, the BMT folks went immediately into culturing my blood (thus the soy sauce in my last post).  They did this at first 2-3 times that first day and then once daily after that.  I also went on major antibiotics, antivirals, and antifungals, but they had no effect on me, I'm sure......they also increased my check on vitals to keep track of my temperature, etc.

They couldn't give me any meds to control my temperature until they verified the temperature and then very carefully so as to not mask any existing fever.  Trying to walk became almost impossible, and it made for two difficult days.

At the same time, Dr Asch reassured me that all of this was fairly normal, even routine.  We are at the nadir, the low point, of the hospitalization.  She suspected that I was not actually experiencing an invasive infection (although that can happen even from within your own gut as bacteria cross over into the blood stream).  She thought it was something called Engraftment Syndrome -- this means that the body is reacting to the rapid settling in (engraftment) of the new stem cells and the ramping up of production of my own new immune system.  She said it was also common to have headaches (check) and body rash.  Speaking of which, no rash on Day 10.  I go into shave on Day 11 and unbutton my shirt to access lower on my neck and What in the world??????  My entire torso is covered with a rash that doesn't itch or hurt.  My legs all the way to my waist look similar, but look more like petichae which is small ruptures of the capillaries caused by insufficient platelets and leaves a forest of red dots.  So -- check.

Today, I was told that my white blood counts were at 500 total with 300K neutrophils (the cells that attack invaders and infections).  They usually want to see 500K neutrophils before they consider discharge so you can hold your own outside.  They also said that my red blood cells went from 24K to 25K -- above the limit for transfusion -- and they did this on their own!  Also, I have been getting platelets for the past two days; they think the fevers were burning them up as they went into my body.    So they checked today, and my plates were up to 22!  Without any transfusion - they did this on their own.  I was saying:  way to go, boys!!

So it looks like Dr. Asch was right (Dr. Mitchell was thinking the same way today).  I am beginning to produce my own new immune cells.  If my neutrophils go up over 0500, we will begin discussing discharge, although it also depends on whether I have any more fevers.

I see this progress (despite my misery) as evidence of prayers being answered.  Thank you all.

Friday, March 20, 2015

Mango juice and soy sauce

Just so we are all on the same page of understanding:  my immune system is dying, and we are waiting for it to go.  It reminds me of the old song lyrics:  Don't it always seem to go that you don't know what you've got 'til its gone?  Although, in this case, my immune system betrayed me, so there is that to consider.

In recent days, my neutrophils (the white cells that fight infections) are at 0, yes, 0:  Nada, zip, zilch.  My platelets dropped so low that yesterday and today I received infusions of platelets.  These are the cells that keep you from bleeding to death if you get a bruise, cut, scratch, etc.  I am now living off of borrowed platelets!  This does make me think to thank ALL of you who have ever donated blood.  You are literally saving lives when you do that.  You often don't get to hear from those who benefit, so let me say it:  Thank you, thank you, thank you.  My red cells counts are also dropping, so I am severely anemic and boy oh boy tired to the max.  I'm sleeping 8-9 hours a night (with interruptions), but now have had to add 2-3 naps during the day just to get through to beddie-by.  I may get an infusion of red cells tomorrow or the day after - they want to delay it if possible because you can build up a tolerance to infused blood products; we'll see what 4:30 am brings.  (That's when they do my lab draws).

The staff?  By and large -- awesome.  Especially given my ceaseless demands for jokes.

So to share with you some of these recent events, I am posting a couple of pictures here of a platelet transfusion.  I called this "mango juice" for what I think are obvious reasons.  See what you think:

Can you guess which bag has the platelets?  

This is a cool little basket that they use to keep the platelets from sticking or clumping together (and thus getting stuck in the hose).  They are supposed to clump together (very friendly, those platelets), but we need them inside me first.

Then today we had a little setback, hopefully.  I began running a fever of around 101 degrees which is their cutoff for action.  They immediately jumped up, started screaming and waving their hands -- no, not really.  This is not unexpected although I have been doing so well (relatively speaking) that I was hoping we could avoid it.  Their first suspect is the trifusion catheter in my chest (see other posts).  It is the major way that we put things into my body and get them out, so it is a potential source for infection.  So, they brought me some soy sauce.

Sorry for the fuzziness.  You can see the soy sauce bottles on the left side.  There were 7 of them.  For each line, there were two bottles to culture bacteria and viruses.  The tall one with the red is the one for checking on fungal infection.  They'll use that on each line in sequence, starting with my blood line today.  All those papers are syringes in their sterile wrappings.  They did not inject me with anything -- they just drew blood out of my trifusion and then put it into the culture bottles.  We may know some answers from this within 24-48 hours.  In the meantime, I'm on a broad spectrum IV antibiotic every 8 hours.  It could turn out that this fever is what they call an "engraftment" fever which is when your stems cells get settled in and start production -- wouldn't that be AWESOME?  But it could be an infection from somewhere else.  So, stay tuned.

And that's the latest!

Wednesday, March 18, 2015

The Funny Bone (Marrow?)

Just a quick post right now.  Here in the hospital, each patient can list three things they want the staff to pay special attention to in order to ensure personalized care.  My top three things right now are:
1.  Joke of the Day -- I ask the nurse to tell me a joke every day; 2.  Ask me how often I have walked; and 3.  Ask about my nausea.  

I have found that even though the nurses are both professional and very friendly, they have a hard time with the Joke of the day.  Maybe it is working on a cancer unit and the seriousness of what they deal with, as well as how busy they are, but many struggle to come up with a good joke.  They seem to enjoy being asked to come up with one, though!

The benefits of humor have been demonstrated with regard to health, so I keep that up on my list -- I know I benefit from even raising it with them every day.

Today, we have nurses in training shadowing the experts, so when I asked John, my nurse, for a joke, the trainee (Ben) chimed in:  What do you call a cow with no legs?  ......

Ground beef.  

I asked them if they heard about the terrible accident a college professor was involved in on his way to a conference when his car went off the road.  They hadn't.  It turned out he was grading on a curve.

That's the latest!

Tuesday, March 17, 2015

The Great Escape

I want to start by wishing you all a Happy St. Patty's!

I've had a lot of visitors lately -- my dear wife has been here regularly, my father came to see me as well as Deb and Barry, my sister and brother-in-law, not to mention my Aunt Or, my Uncle Larry, and friend Robert.  Between the visits and the ongoing daily routine of the hospital, things have been fairly busy.  Thank you all for your love and support.

On the cancer front, so far, no major complications yet (mouth and throat sores, infections).  My blood counts have been dropping every day, and this morning the Physician's Assistant told me that as of today, I have almost no white blood cells.  This is expected, and Dr. Hoda told me that the fact that my counts came down somewhat slower may be a good sign.  

The nausea has really ramped up, so we have been working to try and counteract it and to enable me to maintain my calorie intake and fluids.  This has been more of a struggle, although today it seems a bit better.  Eating is much more difficult when there is little or no appetite.  We'll keep working at it.

To improve my outcomes, I have also been walking every day -- they strongly encourage this, and they have calculated how far around the unit equals a mile, so I've been putting in my time.  However, the other day when the sun was shining and the birds were singing, Patricia asked the staff if I could actually go outside.  There had been mention of something about this in our earlier meetings before admission, but for some reason I thought that would be for after the transplant.  They said that we could!  Thank you, Patricia!

So we conspired and got the whole group to go with us on our regular unit walk, but as we approached the elevators, we whispered to the family and friends that we couldn't stand it any longer and were going to make a break for it.  They looked shocked at first and somewhat anxious as we loaded the elevator, but we all made it out and had some fun with it.

 It was really good to get out for a bit, to see the sunshine not only through a window, and to feel the breeze.  Simple things that are of great value.  I wish I could go out today, but it will be a little while before that happens again.  Enjoy it for me!

 Deb and Anton make a break for it

 Don't try and stop us!

 Barry and Anton - view of the Capitol


Friday, March 13, 2015

On the other side

Yesterday was my 2nd birthday, and I'm sorry that I wasn't able to get anything posted about it until today.  Overall, it was both a high point and a bit of a low point.  Let me explain.

After receiving that lethal dose of melphalan, we need to restart my immune system, to recreate a new chance for life, hopefully one in which cancer plays a back role.  So, I was excited, interested to see how this would go, and what it would be like.  The staff was also supportive, excited, and helpful.  My Aunt Or brought me a little birthday cake and my lovely wife brought me a superman hat for my balding palate.

It was very interesting and exciting.  They got me prepped with medications that were designed to help reduce the chances of negative effects from the stem cells (mostly the preservative they were in), and to ensure a good transfer.  At one point, we had something like six, maybe seven, people in my small room getting things ready.  

Here is Aunt Or watching the proceedings:
Here is my nurse, Shirley, helping to get everything set up.  
Here is where it gets even more interesting -- Mahmoud from the Red Cross brings in the nitrogen bucket, we all called R2D2.  He had to put on blue protective gloves to pull the stem cells out of the storage unit.  In the following picture, you'll see the warmer they use to unfreeze and warm up the stem cells and you will see Mahmoud holding one of my bags of stem cells to make sure it is working well.  

The technology here is truly amazing.  Everything was checked and double-checked.  Then Shirley put up the bag of my stem cells on the "Patient Pal" IV pole -- they did NOT filter or mess with the stem cells in any ways in order avoid any potential risk of damage to the cells.  They infused them directly into me.  You can see the clear IV tube and then the bag next to it with the red fluid -- those were my stem cells coming home again.  Hooray!  

Here I am on the bed watching this happen, seeing the stem cells come back, and playing Imagine Dragon's On Top of the World.   It was pretty festive at that point.  Patricia came over to hug me, and after two bags, the process was done.  

So all of this was a sense of great relief, that we had put into place my future survival, that things had gone smoothly.  Everyone cleaned up.  But.....they had warned me that the process ultimately could be a bit anti-climactic.  For one thing, the preparatory drugs they gave me to help make this a smooth process also zonked me -- I could not stay away for the last parts of the procedure.  After I woke an hour or so later, I was fuzzy and pretty tired.  

I think in many ways, things we look forward to in life, even the answers to our prayers, sometimes may come in ways that leave us feeling just a bit let down -- like they weren't as spectacular as a hollywood film or something.  I didn't leap out of bed and dance a jig.  And that is OK.  Life is full of beautiful moments, ordinary moments.  Life is not about living a series of spectacular, amazing things from one second to the next -- I think it is more about acceptance, about learning and growing, about becoming better people.  That means accepting our more ordinary moments and celebrating them for the threads they play in the weaving of our lives.  

So the latest?  Today was also wonderful -- my father and lovely brother and sister got to visit with us most of the day, but I have also begun struggling with persistent nausea and the fatigue is growing stronger.  This next week may be a bit more of a struggle, but we knew this was also part of the process.  The hardest thing today was to watch them all leave to return home while I remain here.  But this, too, shall pass.  I look forward to better days, weeks, months, and years ahead.

By the way, some have wanted to comment but maybe didn't know how?  When you are reading the blog, at the bottom of a post, it will say something like posted by Anton Tolman.  To the right will be a link that may say "1 comment" or "No comments".  If you click on this link, you should be able to post a comment or reaction to what I wrote.  Make sure to click on the Publish button at the bottom of the comment or it will not save it.

Wednesday, March 11, 2015

Day -1

Today is my "rest" day.  That means no chemo today.  It is a day to make sure that the melphalan is flushed out of my system.  Good news this morning is that so far, kidneys and liver appear to be doing OK despite the assault on them.  I can feel some side effects from the chemo, but not too bad yet.  It will probably get worse in the next few days before it gets better.  My blood counts are also starting to drop, but all of this is expected.  Given that most of the drug has been moved out already, we believe, they have taken me off of my bag of IV fluid -- freedom!  It was so much better to walk without pushing the "patient pal" around with me, not to mention that taking a shower in the morning will be SO much easier.

My birthday is tomorrow -- I'll get my stem cells (some of them) back and we can start to reboot the immune system.  I'll let you know how that goes.  In the meantime, here are some pictures of recent events.

This is Becky who was my nurse yesterday.  The nurses here are great -- caring, warm, and knowledgeable.  I don't have pictures of all of them, unfortunately.
This is my "leave the room" outfit.  I have to wear the gown, mask, and gloves every time I leave the room, and I cannot leave the unit.  The contraption there is my IV pole, the "Patient pal" that I had to push around for two days.  They'll put me back on IV for the stem cell infusion tomorrow, but take me off after a little while.  

My luxury suite -- part of it:  bathroom, window, recliner, I'm sitting ready for the chemo.

One of the strategies to try and reduce mouth and throat sores and pain (which interferes with eating) is to get your mouth really cold to constrict the blood vessels when the melphalan is going in.  We don't know yet how well this worked, but I hope it helped!  No sores yet, but the effects of the drug are building as cells die off.  This was really painful until my mouth got really numb, but yesterday, I shoveled ice into my mouth for about 1.5 hours.

Here is Becky setting me up.  This is how the nurses protect themselves when they infuse the chemo. Tells you something about the potency of these drugs, right?

And here is a shot of my little friend -- my marrow killer.  I'm glad to see you go!  :)

Monday, March 9, 2015

Day Minus Three

What's the latest?

Around here, the date of admission is thought of as day -3 because it is three days until they re-infuse my stem cells (what they call my 2nd birthday).

So far today, I have:

  • With my lovely wife, set up my room including a beautiful picture of a group of wild buffalo in Yellowstone captured by my son Ben hung on the wall
  • Walked almost 2.5 miles and worked out a bit on some exercise equipment
  • Gotten loaded up with lots of IV fluids -- they want to protect my kidneys against damage by trying to make sure the chemo moves through my system as quickly as possible and want to protect the kidneys against the high dose chemo drug
  • At 4 pm, froze my mouth for an hour with ice (flavored with a bit of Italian ice which was nice) to try and reduce the chance of mouth lesions and sores
  • Got an infusion of Melphalan -the high dose drug that will kill off my bone marrow (given to me with the ice in my mouth)
  • Got visited by my Aunt Orlinda Prettyman and my uncle Larry Hawkins -- it was nice to see you both!
  • Eaten some interesting meals - a bit strange chicken pot pie, but actually quite tasty, and blueberry BBQ rib meat; overall not a bad kitchen downstairs
  • Got some work done for UVU 
Overall, a pretty busy day; I told my wife that about an hour after the infusion, that I could feel the chemo moving through me.  She said:  What does that feel like?

It is hard to describe, and I'm sure it is different for everyone, but it feels like a rolling or washing sensation that moves through my limbs and up over my head.  My eyes start to feel more tired or strained, and I feel more fatigued.  Uncle Larry said - it is kind of like it is sucking energy out of you, and he is right.  It is also a bit anxiety provoking because when the nurse came in to give me the drug, she puts on a special gown to protect herself, covers me up with a sterile pad around where the infusion goes in (probably in case of links or spillage?), and then wraps everything up in a hazard bag.  Yet this is what goes into my body.  This is the fun of chemotherapy.  

So, for day -3 a not too bad, pretty busy day.  The doctor today -- very friendly physician born in Czech Republic and now an American citizen -- told us today that usually the effects of Melphalan are not fully felt for most people until around a week later, so that gives me something to look forward to!  NOT!

The staff here are very friendly, caring, and concerned.  I feel like I am in good hands.  
Thank you all again for your prayers and expressions of support -- you are all the anti-cancer.  I can feel the effects of your love and kindness, but it feels GOOD.  

Sunday, March 8, 2015

Who Loves Ya, Baby!

The title of this blog is a very old reference to a police TV show where the bald cop sucked on a lollipop and had a real attitude.  Many of you are probably too young to remember!  :)

This is a short blog today.  Here is a picture of part of my final preparations to go into the hospital tomorrow - thus the police show reference.  I will most likely lose all of my hair (although not right away), so I decided why carry all that in there only to have it fall out?  See what you think.  Patricia thinks I have a "nicely shaped head".

I probably won't have to shave for weeks or even a few months!  Alright!

Thinking about Carine's mountain quote, here is the thought for the day.  Apologies to my non-LDS friends; Jeffrey R. Holland is an LDS Church apostle, but I think this message is profound and comforting:
"Don't you quit.  You keep walking.  You keep trying.  There is help and happiness ahead.  Some blessings come soon, some come late, and some don't come until heaven....It will be all right in the end.  Trust God and believe in good things to come."

That's the latest!  Next blog will be from LDS Hospital.

Friday, March 6, 2015

The Ticking Calendar

What's the latest?

Well, we met with the Blood and Marrow Transplant team (BMT) on Thursday.  We were scheduled to meet with them at 11:00, so I thought we would be done by Noon.  Whoa -- not even close.  We were there until close to 4:00 pm.  They drew my blood for my lab work, changed my dressing (no more bloody episodes since I came home -- hooray!), then we met with the team.  In addition, we met with the Nurse Educator, the Pharmacist, and the Social Worker and got a tour of the unit.  Then I got an admission chest x-ray which is a standard operating procedure before admission, I guess.  They want a pre-admission to check against a discharge x-ray to make sure nothing is going wrong or sneaking in.

What was it like?  Well, the doctor we met with, Dr. Petersen, we had not met before.  He was a "no nonsense" kind of guy -- straight to the point.  He described the process, answered questions, and gave his own thoughts about the value of transplantation and post-transplant maintenance treatment.  He has been working on transplantation back when it was a new therapy, and he has treated a lot of patients.  He is very aware of the issues, and the team is very proactive; their goal is to make my hospital stay as boring as possible.  To them, and now to me, that means no significant infections, no major transplant issues, no complications.  It is a very serious procedure, but because I am still fairly young (although not to teenagers), and in good health otherwise, the risk of major complications is pretty low.

Listening to him talk and his answers to our questions, I thought about Malcolm Gladwell's book Outliers.  One of the major points he makes in that book, that I also point out to my students, is that in order to become really good at something, it takes a lot of practice, somewhere in the neighborhood of 10,000 hours.  This is why with surgeries and other important medical procedures, you often hear the recommendation that you check with your doctor to see how many of the procedures they have done, how many they do a year, etc.  This is all continuous practice and gaining of experience in how to do things even better.  I think Dr. Petersen (and by extension his team) has way more than 10,000 hours doing transplants.  That comforted me a bit.

I think this process will be difficult.  He described steps they take to minimize risks, to reduce side effects like mouth sores and risks of infection, and how closely they monitor patients.  I appreciate all of that, but I am under no illusions this will be a cake walk.  That said, I also fully agreed with Dr. Petersen's overall philosophy about transplantation.  He doesn't think it will cure my cancer.  His goal is to "buy time", to give patients more years of life and better quality of life.  That time gives medicine the chance to continue to make progress -- and in myeloma and other cancers, that progress has been significant.  He said that there are those, including himself, that still hope that they will find a cure for myeloma in his lifetime.  No guarantees there, but every year is another year with my sweetheart, another year to enjoy my kids, to help others, and to try and make the world a better place.  The goal is to make myeloma a chronic disease that we treat until we get to a cure.

Even though this will be hard, I'm in with that philosophy and those goals.  As my friend Carine Clark (a cancer survivor) said to me recently:
"A mountain, like a marathon, is just one step in front of the other.....Yeah. And I wouldn't be wary of it. I'd attack that mountain. I'd embrace it. It could save your life or at least keep you here a lot longer. Say thank you that you have the option."

So, thank you, Lord.  I go into the hospital on Monday.  

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.......