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!

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

Solidarity!

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.

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!  :)

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.  

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.

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.