A Long Slide

 

I can certainly emotionally identify with the boy in the picture above!  Welcome back to The Latest. I'm not publishing blogs very often, but this one is only six months after my last update in September. Good, right? So what's the latest?  

Because the process of my cancer progressing VERY slowly (can you hear the "reeeeeeeeee....." sound going down the slide?), the Cancer Center has recently moved to only getting full blood work outs every six months instead of every three (I am still getting Zometa every six months).  My last full work up was in September, and it was interesting and confusing.  Why?

• My M-spike increased to 1.1 -- only a 0.1 increase over April, but also the highest number since my stem transplant.
• My Kappa free light chains was up to 30.3, also the highest since my stem transplant, up from 26 in April 2020 (highest normal range is about 3.3 to 19.4). Just as a reminder, one of the functions of plasma cells is to create antibodies which are made up of both heavy protein chains (longer, bigger), and light chains (smaller). Excessive production of light chains is a hallmark of Myeloma, and can damage kidneys over time. Some medical sites describe the serum levels of light chains to be a better indicator of clinical outcomes than the M-spike.  
• I've posted before about my weight loss prior to my diagnosis and transplant. At my peak, 2014, I weighed about 220. Since being out of the hospital and after recovering, my weigh has hovered around 194 or so (minor fluctuations) for the past four to five years. In the past two months, my weight has (as of my recent home weighing) dropped to about 182.  Yes, we take daily "quick walks" with Belle, and my wife and I are trying to reduce our portions a bit and eat less desserts and treats, so that may be part of that. I'm keeping an eye on the weight though, because it seems to be dropping fairly quickly.  

On the other hand........

•  My calcium and kidney markers are still very good -- so no obvious significant damage to bones or kidneys.
• The single most important marker related to light chains is the ratio between the two types of light chains:  kappa (mine) and lambda. Some folks with Myeloma have more of one, some have more of the other. The ratio should be 0.26 - 1.65 in the healthy range. My ratio has been above that, up to 2.24 in April, since July 2019. My NP even mentioned some concern and need to watch this. So, although my kappa chains were at their highest ever, apparently so were my lambda chains, so my ratio in November was 1.46?!!!   What.....??  I don't really know what to make of that.  
• My liver function tests are still above healthy range, but look better, overall, than they have in years.  

So it looks like I'm still sliding, but I'm not sure how fast, and maybe I'm turning sideways as I go! Of course, that is probably true for most children on slides? I don't really know what is going on, but we'll see what the next results say in April.  

But wait!  There's....you know. This March, I celebrated SIX YEARS since my stem cell transplant.  Wahoo!  That is really a milestone. I remember wondering if I would make it to my son's wedding. Yes! And now there's two grandbabies to enjoy and love! I wondered if I would still be able to work.  Yes! (Online). Since last July, I've been on sabbatical; I've gotten a lot done, and right now I'm working on a research project, starting to write a federal grant proposal, and trying to finish up three manuscripts (one is about ready to send back, hopefully for publication). Patty and I have had more time together to enjoy movies, laugh at dog and elephant videos, and look forward to our COVID shots. Huzzah!

Speaking of which.....

I have now had both of my COVID shots (Moderna). In a couple of weeks, I may feel a bit better. I may have mentioned last time, that I may not respond as well as most people to the shots, but I should be more protected than I have been. So I'll still be cautious and yes, I'll still be wearing a mask to public situations until most of the population has been vaccinated. So even if you're reading this and not sure you want to be vaccinated, please do! Do it for your friends and families, and even people like me. The COVID variants are also still an issue, but we'll just have to see what we learn as the data keeps coming in. I'm truly grateful to all those who have worked to care for those afflicted and to develop these vaccines which are modern miracles.

In many ways, I'm very glad that my sabbatical just happened to get sabotaged by COVID. I haven't hardly been on campus, and we are very comfortable here at home. I have had less stress since I have been focusing on writing and such, and although it is still a lot of work, it doesn't feel as pressured as grading, and I'm still enjoying working with my research students. That said, I'm looking forward to interacting with students again this fall (even if mostly still online).  

I hope all of you are doing well and enjoying the somewhat lurching start of spring. Thanks for reading my blog and caring enough to check in and see how I'm doing.  My love to you all!  Until next time....stop and smell the flowers (unless you have severe allergies......)

What's For Dinner?

10 months since my last post.....yikes. I wanted to write this post for a while, but something else always seems to come  up.  The picture you see really is the pile of pills I take in the evening, although we have now added one more. It makes me think of a conversation I was having with a friend a few months ago; he also suffers from multiple health issues, and we were commiserating about our problems. After he shared his, he asked me to describe my situation.  As I finished, his eyes were a bit wide and he said, "You win!"  HAHAHAHA

I also take a pile of pills at breakfast, but unlike the ones in the picture, they are mostly supplements to try and keep my health up. The point here, as my wife notes, is I take a lot of pills. The good news of this is that they seem to be working! 

I may have already said this in another blog, but I am "generally" healthy in the sense that I am not in the hospital, not in painful agony, not currently taking chemotherapy, and not getting substantially worse.  I am almost fanatical about taking my pills and doing my morning and evening routines. In some sense, I feel a bit like I am juggling multiple balls at the same time, and so far, things are going OK. Keep juggling!  Kudos to my wife who tolerates and supports me in my fanaticism.

I admit that there is some anxiety underneath all of this. What if I miss several doses of something and one of my multiple conditions starts to get out of hand? What this be like a wooden tower of Jenga slowly tipping over? Hopefully not, but that is what is in my head!!

So what is the latest?  

Overall, more of the same, which is a good thing. My M-spike is holding at 1, although I don't think it has dropped below one (like it was sometimes doing before) in quite a while. My oncologist moved me to Zometa treatments every 3 months with full blood work-ups and meetings every six months. I had a recent PET scan (my annual tradition is usually a full-body CAT scan, but they did PET this year to see if there were active tumors). The results showed NO large very active tumors. 👍  Obviously, there are still myeloma cells in my bone marrow, or I would not have a suppressed immune system, ongoing fatigue and weakness, and any M-spike, but it seems like the cancer is just maintaining status quo for now -- it is keeping itself there and alive, but not growing quickly which would show up on the PET scan. The only worrisome sign are the labs that track the proteins that can damage my kidneys. They have been slowly going up, so we are keeping an eye on those. 

We had another great report recently -- for the first time in 5 years, my dentist said I showed improvement in my gum disease.  Wahoo! After being frustrated for all this time that I could not seem to get rid of the gum disease, I switched to a new toothpaste designed to attack gingivitis and periodontitis, and I am using an Amway mouthwash; one of these, or maybe the combo, has lead to this success. The periodontitis is not gone, but I feel like I beat it back under the bushes. Hopefully the next report will be even better.  

Having Cancer During COVID

I don't think I'm alone in feeling like this year has been one awful roller coaster ride. It didn't start too badly at the beginning, but now 2020 feels like:  

 

 

Right? The recent hurricanes and massive evacuations from the fires have not made things feel any better. Having Myeloma and a compromised immune system, not to mention all of the other side-effects/exacerbated conditions that the cancer seemed to trigger off, makes me VERY high risk; most of our family is high risk. We are very cautious and wear our masks when we go into any public venue (which we usually do mostly for basic things like groceries) -- this may help protect us somewhat and if we do get infected will help others;  we wash our hands, we maintain social distance, we track rates and locations of disease spread. I was terrified and very anxious for the first several months of the pandemic. As we have learned more about the illness, we are not quite as anxious, although we are still very cautious. We are grateful to all who also wear masks and social distance when we are out.

 

We miss seeing friends and neighbors, and we are hoping and praying that all of you are well. We know of some (including some of you reading this!) who have suffered greatly as a result of this pandemic -- our son also came down with it back in June, I think. He came through without hospitalization, but he had a rough time of it for a while. He recovered and hopefully is protected for a few months, at least. We still encourage caution.

Now we come to the best part of the year! Our son, Wes, the Squatty Potty Prince, returned home to live with us in April because all of his work opportunities in California shut down. Honestly, given what is happening there now, it was probably a good thing. Then in August, our other son Ben, his wife Sonal, and our adorable grandson came to stay, so we have had a full (and sometimes loud 😬) household! There is another Tolman on the way, due in December, so next visit will be even a bit more chaotic. They are considering moving out to the intermountain west, so we'll see what happens.  We love snuggling with the grand baby, playing with blocks again (been a while since we did that), and reading the same books over and over (THANK YOU Orem library for some variation).  We hope you are finding joy in your families and peace during this turbulent times.  

So, on to dinner!  I wonder what I should do for dessert??

The News -- from my recent Dr. visit

Hello everyone!  I thought I had posted earlier this year, but looking the dates --- WHOOPS.  It has been too long.  I have been getting asked questions about how things are going, and some have even noted that I have not updated the blog recently, so it is p.a.s.t. time I did so.  Sorry for making you wait so long.

So I had my most recent checkup on October 21.  This was accompanied by my favorite Vitamin Z treatment (Zometa).  I don't know why, but it usually does not strongly hit me for a day or two.  You think I would be used to that by now, but like a board game where you think you are ahead and then everyone zooms past you at the last moment (believe me it happens to me a lot), the Zometa always hits me pretty hard just when I think I've got it down.  No exception this time......I'm just glad that is over for another 2 1/2 months.

"Went to the doctor and the doctor said......"   So what did the NP say?????

Good News and not quite so good news.  Usually folks want to hear the good news first, and it is very good.

(Have I built up enough suspense yet?)

THE GOOD NEWS (and I'm not talking about the gospel here.....)
After reviewing my most recent bloodwork, she said it appears that I am still stable, and she does not see the need to resume chemotherapy at this point.  She wants to continue with the every 3 months Zometa treatments and the every 6-month check-in with her.  So that is GR8!  I was a bit worried before I saw the blood results on Sunday night that we might be heading in that direction.  I have been more fatigued and hurting a bit more in back and joints.  Maybe I'm just getting old..........

NOT QUITE SO GOOD NEWS:
She said I'm still anemic and that might account for my fatigue.  She encouraged me to continue attempting to exercise.  What I've been doing lately, because our old dog Andy sometimes is sleeping when it is walk-time, I've been talking the less old and more sprightly Belle out and trying do so some interval jogging.  This sometimes leaves me a bit sore and hurting (like today), but it is my attempt to do something.  I also take the stairs rather than the elevator at work if it is only a couple of flights.  No need for clapping, I realize I'm really on the cutting edge of fitness, here.......

However, looking at my blood results also has some wrinkles in it, and she noted these.  For example:
Here is my latest graph of my abnormal Myeloma protein (or M-spike) data:

This chart is data from about November, 2017 to now (October, 2019).  The M-spike looks pretty stable around 0.9 to 1.0, but is also at an overall higher level than it was before.  Still.....it is moving very slowly (sloth-speed I call it).  Also, the average of all M-spike scores before Nov 2017 was 0.77; since Nov 17, it is 0.93.  We'll keep an eye on it -- that is over a two-year period, after all.



My Red Blood Cell counts are next -- low RBC defines anemia.




This is over the same time period as above -- not a terrible drop, but there is a fairly clear downward trend.  Will that continue?  Who knows?

The biggest worry has become my Light Chains numbers.  They have been in trouble before, but with one exception (April, 2018), even when my Chain scores have been elevated (bad), the ratio was within the normal range (good!).  This reflects the relative balance between the two major kinds of Light Chains.  In my last visit, she expressed some concerns about these because the ratio has shifted into the "abbey normal" range.  Since April, 2019 I have had elevated Kappa chains, and since July, the ratio has also been above normal following a period of two years when they were in the normal range (with that one exception).  This could mean progression of the cancer is coming and continued pattern of this could potentially damage my kidneys.  The good side of this is that the ratio did drop slightly from July and is not way above the "abnormal" line; I think that is why she wanted to keep on the current schedule.

Overall Lamba/Kappa Lt Chain Ratio Average:

1.42095238

Average before Nov2017:

1.36916667

Average after Nov 2017:

1.49

Increasing

"Normal" is a ratio of 1.65

My last two ratings:  1.71 and 1.67

So -- better news than I expected in some ways.  As always, some things to worry about.  Sometimes people have thought that I am in remission.......but sadly, no.  As you can tell from my red blood counts, that does not look like remission.  And I didn't even show you the white blood counts!

So, as the Brits would say:  Tally ho!  Carry on! As the Lord said, "Sufficient unto the day is the evil thereof".   I will value each day, do what I can knowing I'll have better days and bad days, keep working on what I can do, and play as many games as I can!  :)  I will love my wife and family, and I greatly appreciate the support, prayers, name in the temple, and the physical assistance that I get when needed.  Thank you all for your love and concern.  I'll try and write a bit more often in the months ahead.

And it HAS been five years since I was diagnosed --- what a blessing, indeed!!

-- Anton

Love and Hate

We've all heard the term "love and hate relationships".  Well, I have one of those.  No, not with my wife!  Or my dogs......or......   Anyway, I have it with my Zometa treatments.

My wife said use this picture because I like dice!

Last week I had my quarterly visit with the oncologist/physician assistant and my lovely Vitamin Z treatment/infusion.  I have been doing this now for three years, and used to do it every month, so this is easy, breezy, right?  Sort of.

The process itself was fairly simple, and I am used to that.  While I waited for the stuff to drip into my veins, I chatted with my neighbor and found out that he has colon cancer that has metastasized to his abdomen, lungs, and brain. Wow. That was hard to hear, but the he asked me about my situation, and I also found out that his wife was just diagnosed with Multiple Myeloma.  When it rains it pours. I offered my sincere sympathy and gave him some suggestions for his wife to help her prepare for stem cell transplant.  I've been through a bit, but I think they are really struggling. He said how fortunate he felt for the love and support he has received from his ward and community, so I am also grateful for that.  I hope, in a small way, that I also helped.

After my infusion finished, I went to school for some meetings.  I usually get hit by the Zometa the evening of the same day, but I didn't feel too bad.  I thought, "Well, maybe I'm getting the hang of this."

Wednesday, I woke up, feeling a bit stiff and a bit more tired than usual, but doing pretty good.  I had a productive day and went to game night (hooray!), but got more and more tired as time went by.  Still, I thought things had gone pretty well.  Hah!  Wednesday night I really had trouble sleeping.  I increasingly had pain and exhaustion.  I felt like I had been nicked by a bus.  Everything hurt from my head to my toes.  In the morning, I woke up and decided no exercising for that day.  I could barely walk.  Arrrgh. So I think it is easy to understand the "hate" part of the dice. What is the love part?

The love part is that Zometa may be part of what is keeping me stable.  During my checkup, the PA looked everything over and said I was still stable; the results didn't look too bad (especially compared to what she usually sees).  She wanted to keep an eye on some of the tests, just as I do, but said for now, we wouldn't change anything.  So if Zometa is keeping this going, I love it!  ❤️ The best part of the recent results is that my liver function scores are dropping from moderately abnormal to less abnormal.  Not sure why, but maybe exercise?  That is good news, so I hope it keeps happening.

Here's the update:  As noted above, things are not much worse.  That said, nothing is normal.  Here are the big four -- I decided to make up charts for you guys!  The first chart shows my White Blood Cell counts, since March, 2016, so 2 years and 4 months worth of data.  Keep in mind the later numbers are a bit more spread out over time.  NORMAL range for WBC's are 4.3 - 11.3; my average over 28 months is the green line:  3.2. The red line is the bottom of the normal range (most people are generally not at the bottom).  So, yes, I'm still doing fist bumps, lots of hand washing, and taking antiviral medications.
I almost hit bottom end of normal there, in January 2017, but they look a bit squashed the last several blood draws.  We'll keep an eye on it.

Next on stage is my Red Blood Counts or RBC.  This is what keeps me anemic, makes it a bit harder to breathe and have energy etc.  NORMAL range is 4.7 - 6.1; again, the red line is the bottom of the normal range.  The green line is the average over the 28 months -- not terribly low which is good.  Just not high enough!  I'll keep eating spinach and kale.  Note the chart starts at 2 and goes up to 5.  Overall, the RBC's are probably the most consistent.

Now for one of the villains; the chart below shows those pesky platelets, you know, the cells that aggregate to prevent blood loss?  Thems the ones.  They are not so low that I can't stop bleeding, but when I was in chemotherapy, they would not give me Velcade is my platelets dropped to 30 or less and usually would give me an infusion at that point.  The latest ones are in the mid 50's, so I hope they do not drop any further.

Normal range for platelets is 159 - 439.  The red line is the bottom of the normal range.  My average over the 28 months is the green line:  65.  So I have been below my own average now since December, 2017.  You can see the blue line below the green line.  The last time I was just above my own average was in November, 2017.

And the coup de grace is my M-spike.  That is the number that I personally worry about most; my doctors look at a bunch of different things, but for me, that is my indicator of cancer activity.  Normal is zero.  Hopefully all of you have an M-spike (monoclonal protein spike) of zero.  So in this case, the red line represents my average over 28 months which is 0.75.  Not bad compared with my 1.7 at diagnosis, but higher than my 0.3 after my stem cell transplant.  However, look at the blue line.  You'll see a jump above the red line around July, 2016 which stayed stable for a long time.  However, the last four blood draws, going back to November, 2017 are all above that line.



So there you have it!  The latest update, by the numbers.  The last few M-spike numbers are moving around more than they did for a while and are ticked upwards, but not by a lot.  So I'm not that worried about them, but I do want to see what will happen over the next six months. I am anticipating some ongoing fluctuations, and hopefully not much going above 1.  A lot also depends on what happens with the other numbers, so I'll keep you posted.

So, in life we all have things that we have love/hate relationships with, sometimes even in our own bone marrow.  I am grateful for my abnormal stability and hope it keeps growing v e r y slowly.  Every day, new treatment are being tested and approved, and every day is one more day to enjoy my wife, my family, my friends and neighbors, and the beauty of the world we live in.  I hope that I convey that gratitude in how I treat all of you and in my relationships with my students.

May the Lord bless and keep you!  See you at the next update.

Happy Birthday and Mysteries

Time to update the blog!  Welcome back, friends and family.

On March 12th, I had my 3rd birthday -- wahoo!

As a reminder, we call it that because I was given a new birth, a new immune system, on March 12, 2015 -- a day that will live in infamy.  I left the hospital, I think, on March 28th and returned home.  

So I have been around just over three years with a new immune system, and things are going relatively well.  Want details?  Well, you've come to the right place!  If you don't want details, then skip down to the bottom for the BOTTOM LINE.

Last time, I told you all about our trip to SLC to visit with Dr. A at Huntsman.  Well, we have been having a busy spring since then.  It was time for a regular skeletal survey (x-rays of my entire skeleton) to see how things were going, so we did that.  He also recommended a consult with an endocrinologist (to see if I had endocrine problems which are part of POEMS), and my skin doctor to check on the Vitiligo, but also to see if there were hemangiomas which are skin-changes related to POEMS.  So we did both of those, and then the endocrinologist wanted a series of tests, and last I got an updated PET scan to compare with my earlier scan done in 2014.  Oh!  I also had some real fun with another bone marrow biopsy done up there at Huntsman.  Then we went back to see Dr. A and go over everything.

Whew!  At the very least, all of this gives us an updated picture of where things are right now.  I won't go into every single detail, but here are the highlights:

• My most recent lab results showed an M-spike (cancerous proteins) of .91.  So after having been stable at mostly around 0.7 for three years, it has now seemingly taken a step upward to around 0.9.  We have three readings now at 0.9 or higher; we'll keep monitoring it.  The biopsy also showed about 10% of abnormal plasma cells in my marrow which is about where it was when I was diagnosed in 2014.  Kidneys are still doing OK.  
• My blood results have been more steadily lower than before (probably due to the increased M-spike), but not terribly so.  Platelets continue to hover around 65 or so -- I bleed quite quickly when I am poked or whatever, but I am able to stop the bleeding.  The lowered white counts mean being cautious STILL with getting sick from others.  
• PET scan showed two lytic bone lesions that were not active, which I think means that the holes are not getting worse.  No signs of sclerotic lesions.  Spleen is enlarged. 
• Other test results related to POEMS were negative, so Dr. A told me I do not have POEMS.  (Skin results showed some small growths, one of which was analyzed, but the biopsy was negative).  I still have multiple of the "lesser" or optional symptoms of POEMS, and I do have some major criteria (myeloma and neuropathy), but I am missing one of the other core symptoms -- so close, but no cigar!  That's OK, I don't smoke cigars, anyway.  

Patricia feels that the Huntsman team "led us down the garden path".  I can understand that perspective, but even though all of this was quite expensive, I do feel better knowing where I stand, that I don't have POEMS, and that my bones are in relatively good shape, all things considered.  

The other interesting thing about all this was the revelation that I am a MYSTERY patient!  Don't you love a good mystery?  My doctors don't!

Mystery #1:  my endocrinologist was flummoxed.  (I love to use that word!) looking at my results.  Good news:  no major endocrine problems other than my insulin and blood sugars.  Bad news:  in that regard, he couldn't decide if I had diabetes -- my regular blood sugar readings are sometimes fine and sometimes have been very high.  So he had me do a Glucose Tolerance Test, and the results came back around 275!  VERY high -- and normally this would be a slam dunk diagnosis of diabetes.  However, my A1C results, which average my blood sugars over time is NORMAL.  Wha?????  He finally wondered if my A1c test was being impacted by possible autoimmune problems, so he ordered some tests to check my sugars that did not involve using my blood cells -- they came back normal.  However, I know something is up -- I sometimes experience low blood sugars.  He finally decided to diagnose me with Type 2 diabetes, but told me it is mild -- no treatment at this point other than watching my food, reducing sugar intake, and increasing exercise.  He wants to check on me again in 3 months.

Mystery #2:  my relative (or stepwise?) stability with my cancer.  My test results suggest the cancer is impacting on me -- and I know it is; I can feel it.  However, without chemo why is it progressing so very slowly?  Don't get me wrong -- I love that it is -- but it is a mystery.  Dr. A came up with three possible explanations he could think of, but he has no idea if any of them are right:

1. Myeloma is heterogenous, meaning there can be multiple types, and I understood that a person could even have more than one type in their bone marrow.  So he wondered if the stem cell transplant DID work, but it killed the more active version of myeloma that was in my marrow leaving behind a more "silent" or slow moving myeloma that is what we are dealing with now.  
2. Maybe the transplant worked to "knock down" the myeloma -- kicked it in the teeth, so to speak, letting my immune system activate more and start to fight it.  If this is the case the slow progression may mean that over time my immune system is slowly losing the fight, but the battle continues!  There is more of an equilibrium between the cancer and the immune system than there was before.  
3. It could be that my ongoing Zometa treatments, possibly combined with my Chaga tea (thanks, Roy!), etc. are keeping the cancer from spreading quickly as it is wont to do.  
4. Dr. A did not say it, but we would like to add:  A MIRACLE, the result of a loving priesthood blessing, and the prayers and love that have come our way.  

We don't know which, if any, of these explanations is right, but they are kind of interesting to ponder. We also asked them why I was still so tired and had trouble breathing with much exertion.  They said they didn't know, but that they wondered if it could be related to my heart and recommended I see a cardiologist.  More doctors!  So we'll wait on that a bit, but will probably check it out.  

OK, here it is:  

== BOTTOM LINE ==

I am slightly worse off than I was six months ago.  I apparently do have mild diabetes, my cancerous proteins have increased slightly, about 10% of my plasma is cancerous, and my blood counts are lower than they have been.  However, I am WAY better off than I was when I was diagnosed in October, 2014 when I was beset by infections, etc.  My ongoing home treatments, the use of my antiviral medications, and my Zometa all may be helping me prolong my days and keep the cancer at bay without chemo!  Wahoo!  

So we are heading off to see Wesley's graduation at the end of the month, spend a few days in the Big Apple, and then come home to finish up and submit grades.  

I am grateful for each day I have; I love my family and friends, and appreciate tremendously the support I get from my department at UVU.  Thank you all -- here's to the good fight!   

Then...and Now

First of all, I write this on the last day of 2017, so let me just say:

I wish you all a terrific new year and hope it will be a great one for you and yours!  

I also feel I should update everyone on my visit to Huntsman Cancer Institute in November.   I've never been to Huntsman, so this was a new experience.  We met with Dr. Atanakovic who is the Director of the Myeloma Clinic.  This was really nice because that clinic sees over 800 patients (almost 900) all of whom have Multiple Myeloma.  So, even my local oncologist who does see Myeloma patients does not see that many -- he mostly deals with leukemias and other types of blood and other cancers.  So this was a chance to hear from someone who is immersed in just my cancer.  

I will say that Huntsman is beautiful -- although I am sure it was very expensive to build, going into that setting is somewhat relaxing.  To see a clinic with people wearing masks, and to see bathrooms where they have wipes next to the door handles really made me feel that the anxieties I live with every day are understood.  The Dr. and his PA were both really up on my chart, asked many questions, and reviewed my prior results.  

He said a few things that were interesting.  Regarding my prior test results, he basically told me that I had an "atypical form of myeloma".  He said that my results were quite surprising to him -- when myeloma comes back, it usually is quite aggressive, but he was impressed that I had been stable for so long.  He thought that it even looked a bit like the disease had "regressed" back to what they call smoldering myeloma.  In our discussion, he noted that it was possible that I could remain stable if this pattern continued, possibly for years.  He said there was no need for any additional treatments at this time -- whew! -- and that I should keep doing that I have been doing.  

He was concerned about my shortness of breath, skin vitiligo, unusual liver function scores, and other issues.  He wanted to run some more tests.  Then he set up a follow-up appointment, and he and his PA left.  They came back in, like, five minutes!  He said that they had been discussing my case as they left and, his PA said something that really caught his attention.  In my original MRI skeletal scans, they had noted that one of my lesions/damaged bone areas was a sclerotic lesion.  He said this was unusual -- usually myeloma creates holes in bones (lytic lesions), but a sclerotic lesion is like scar tissue on the bone.  This linked to a possible situation that could explain many of my symptoms -- a syndrome called POEMS.  This is a quite rare condition, so he didn't think it was highly likely (1 in 1 million), but he thought we should check on it.  

The other thing he said that Patricia really found liberating was that since my M-spike (myeloma protein spike in my blood) was 0.3 when I went in for my Stem Cell Transplant, he would not have done the transplant. He said if the spike, the abnormal proteins, are not 0 at the start of transplant, he believes the transplant does not work.  Of course, this was born out by the return of my myeloma very shortly after my transplant, although it did stabilize.  She asked him to make sure to share this type of information is shared with LDS Hospital so that other patients would not have to go through what we did.

(Now to the title tie-in)......So, that was then.  So what is going on now?  Wazzup?Before we left SLC, we got blood drawn (lots of blood drawn) and got a chance to visit with my Aunt.  I went back in December for lots of fun including them drilling a hole into my left hip for a bone marrow biopsy and more blood tests as well as the always popular "orange jug" 24-hour urine sample which I got to carry around with me for a while.  It has been a while since I had a biopsy, and it made me remember why I don't really like to do it.  That was almost two weeks ago, and I am still a bit stiff, but at least the itching and pain have gone down.  

I have another meeting with Dr. A next week, so he will give me all the results, and we'll discuss them.  I also have another bone scan in January, so I'll have that data when I meet with Dr. Wallentine locally again.  From what I can tell (spoiler alert!):  I am not showing abnormal levels yet of elevated free chains (which are the molecules that damage my kidneys); the POEMS results also came back, and I do not have that condition -- which still leaves questions about why I have so many things going wrong at the same time.  I've got Questions! ????????   Here's the bad news:  Remember that my M-spike has been stable around 0.6 - 0.7 for more than 2 years now.  It bumped up occasionally to 0.8 and then would drop back down the next month.  Well, my November reading was 0.91 and my December reading was 1.03; I'm hoping this is due mostly to different labs?  But we'll talk about that.  It may mean that the myeloma is NOT going to be stable for years and may be coming back.....if it goes up by .10 every month or so, we probably would start talking about chemotherapy again.  Arrrgh.  We'll see what Dr. A says, though, in light of ALL the test results, before I get too anxious, but it would explain my slight increase in fatigue (I'm sleeping better though as a result......).  My white blood counts in December also dropped quite a bit; they had been just below normal, and this last time were a fair amount lower.  I've also lost about 3 pounds in the past month, although I am cutting back after the holidays!  

So, that is the latest.  Hate to end the year on a bit of a low note, but I am still kicking and will still be here in 2018 -- we are planning a trip to see Wesley's graduation at the end of April, and then on to NYC where we will see at least one Broadway show and other sights.  I am looking forward to 2018 and my blood cells will just have to keep up!  I'll leave you with these thoughts -- and my best wishes for a wonderful new year! 

A New Leaf? We'll see......

With the fall leaves all coming down and the beautiful colors, I thought that I needed to post an update to my blog.  I have been meaning to write this now for 2-3 months, so I am glad that I am finally getting to it.

In October, we went past my 3 year anniversary of my full diagnosis.  We had already been told earlier in the summer that I likely had myeloma, but it was uncertain how serious it was.  Only in October 2014 after lots of testing and scanning and other things, was I diagnosed with full myeloma.  Of course, you all know what happened after that.  So, three years -- and I'm still kicking!  Wahoo!

  

Am I still grouchy about this?  You bet.  Is every day wonderful?  Ummm.......no.  With more cold, my neuropathy is acting up, and I am chilled and have more trouble with my hands and feet.  However, I was able to travel to Montreal for a conference a couple of weeks ago, and although I got tired, my presentation went well, and I had some great fun networking with colleagues, learning new things, and playing some board games!  

Photo credit to Derek Bruff (takes great pictures!)

So what is the update?  Steady as she goes.....in my last meeting with my clinician, the blood work looked about the same.  My M-spike is still at 0.7, my white and red counts were a bit lower than normal although one of the specialized white counts was up.  I wonder if that might be due to my system trying to fight this low-grade sinus infection I cannot get rid of and that sometimes makes it hard for me to breathe at night.  My kidneys are looking OK.  My weight is about the same.  It has gone up slightly; in some ways this is good, right?  If it was going in the other direction, my anxiety would be going up. 

I also decided to start back on a regular exercise program to see if I could increase my energy and stamina, so I put my Wii exercise program to start up at the easiest level.  The program builds in 4 days of exercise every week for 9 weeks.  I didn't make it two weeks!  I told the doctor that I cannot exercise two days in a row; it wipes me out for 3-4 days afterwards.  She looked at me and said evenly, "Well, don't work out two days in a row".  Yeah, OK.  It is not the end of the world, but it is annoying.  So I'm trying to see if I can do 3 days a week; it is better, but still difficult.  

So Where's the New Leaf????

I have been doing some soul-searching with the helpful input of my lovely wife for the past several months.  I got up in testimony meeting several months ago and said that I was grateful for the fact that I was stable.  I said, It wasn't the miracle I asked for, but it was the miracle I got.  That is still true, but I realized that my thoughts and my statement was kind of like a slap in God's face -- a backhanded compliment.  I have decided I need to repent, turn over a.....you know.  I am working to accept what I have and to be truly, grateful for it.  Because it is a miracle; no one knows why I am stable, but I have had 2 1/2 years without chemotherapy; I am able to work, to go to a conference, to walk with my wife and dogs.  And even though what I used to be able to do is gone and probably will never come back, I am breathing and walking in the fall colors and enjoying the change in the seasons. 

The only other new thing to report is that we have an appointment to go up to Huntsman Cancer Institute on Monday the 13th to meet with their Myeloma specialist.  We had a physician friend tell us that it never hurts to get a 2nd opinion, a 2nd look at how things are going.  I still have nagging worries that because I did not go on maintenance therapy, that I may have shortened my life, and I'd like to discuss that with another doctor.  Because he is at Huntsman, I am also going to ask about clinical trials and thoughts about whether it is worth it to consider doing one to see if I could feel better. I hope that doesn't sound ungrateful after what I said above.  I think they are separate things in my mind.  If there is a strong chance to achieve remission, it may be worth it, but if not, I'll stay where I am and deal with it day to day, with gratitude for every day I am given.  

Have a great fall and holiday season!  Thank you all for your support.