The continuing saga.....

 

 Hello, everyone. I'm sorry that this post has had the longest wait time to be published since my last one on Christmas last year. A lot has happened; this may be a bit of a longer blog, and so I recommend.......

 

There has been A LOT going on. Several things were happening at the start of this year:  

1) I had begun losing some weight again. For the past several years, my weight had been pretty stable around 184 pounds or such which was about 40 pounds lower than my heaviest (pre-cancer), but in a short time, I lost another 10 pounds. 

2) I had become (and still am) increasingly tired, impacting both my ability to think clearly, especially late afternoon to early evening (I feel a bit better after dinner and then calming down and relaxing).

3) My platelet count which has been pretty stable for multiple years, ranging around 60-65 or so suddenly dropped to around 40-45; also, my M-spike which you all know by now is the main indicator of my cancer progress jumped from its value of around 1.0 (back and forth from 0.9 to 1.1) to 1.4. Together with the platelets, that worried me that it was starting to accelerate. 

I had a (regular) chat with my medical folks. They said it was time for my annual CT scan to look for tumors or signs or things getting worse.  There was some good news -- they found no active tumors, although the cancer is still active in my bone marrow. A recent review showed that the myeloma was stable -- not accelerating.  So....phew! But what was making everything else worse?

From the CT scan, they told me that my spleen was also enlarged. I had heard that before, but it never seemed to concern the medical team that much. However, this time it was larger than before, enough to represent a potential danger to my life. They told me I needed to see the Gastroenterologist. He wanted to run a lot of procedures and tests, which, as a gastro guy, involved sticking cameras in various places. So after months of this, I have learned some things, and we have reached a few conclusions........(I'm building suspense here.......)

 

• The spleen is sort of a "bank" of blood cells, especially platelets. If the liver gets damaged, these cells tend to collect in the spleen as a way to reduce pressure on the liver -- this lowers the platelets in the blood stream, making me more likely to bleed quickly (even more than before). This enlargement of the spleen also increases risk because if it is damaged, there will likely be internal bleeding that may be difficult to stop. 
• The enlarged spleen also signals significant problems with the liver. The doctor believes that the overall tests strongly indicate cirrhosis or scarring of the liver. I have an appointment with him next week to clarify all of this data and conclusions. After my last procedure, Patty asked the doctor if he thought what I was facing was potentially life threatening. He nodded his head "yes" - vigorously!
  
• The way the doctor described it to me, he said that there are two major stages of liver disease:  compensated cirrhosis and uncompensated cirrhosis which is worse. He thought I was at "the severe end of compensated cirrhosis", so the goal is to potentially reduce the amount of fat in the liver which should increase the percentage of healthy liver I have and prevent the need for liver transplant (which they might never do for me given that I also have cancer?). However, when Patty and I looked at the symptom list of compensated cirrhosis, I have almost all of them. 

Lovely, eh?    

 

So, unless he says something different next week, we are moving on treatment right now to do the following:  

• Change my diet; we have already begun this. Reduce carb intake, especially sugar, but also other types of carbs -- so no cookies, spaghetti, cereal, etc. Focus on lean meats (little red meat), lots of vegetables and fruit (not too much fruit - and some fruit is at the high end of carbs, so very limited consumption of grapes and others), whole grains (need to talk to the doctor about whole grain bread, for example), and legumes (also need to talk with him about that). He encouraged the South Beach Diet, Mediterranean diet, more "keto"-ish. This reduction in carbs should increase my body's burning of fat (including fat in the liver). Patty has mostly joined me in this effort, although she just had to resume some carbs for her own energy and health. This is the first time that my diet has been restrictive than hers!
  
• Lose weight -- this is linked with diet. So far, using my home scale, I have dropped (since we started this year) from about 174 to 158 this week. Yowza. However, some of that is muscle loss, so I need to try and increase exercise and try to rebuild some muscle mass. 
• Changes in medication to replace my hypertension med that is harder for the liver to process and replace it with a beta blocker. We'll be making that switch soon. Wish me luck!  

On top of all this, this semester I continued as co-chair for our department tenure review committee, and we reviewed NINE portfolios which may be a record at UVU. It was exhausting, but part of my goal has been to train my co-chair and get her ready to take over the committee. I also continued to serve as Assistant Chair, working with the coordinators of all majors in the department to get courses scheduled (around or more than 300 classes per semester). I have also been involved in training a new department scheduler. Then, teaching. My department reduced my teaching load because of these administrative duties, and given my situation, they gave me two wonderful Instructional Assistants -- hooray! They have greatly shouldered the burden for grading and allowed me to focus on student interaction and teaching. You may have already seen this, but this is pointing to........

       

That is where I'm headed. I have already told my department that I will be taking Family Medical Leave next semester, and in January, we will apply for long-term disability to get me to Social Security age. I had hoped to finish up this academic year and then do this.......but I just can no longer should all those responsibilities, and trying to manage my health takes up significant amounts of my time. The past three semesters have been very difficult for me. However, I have been relieved because each time I spoke of my plans with my three doctors (GP, oncologist, and gastroenterologist) about whether they believed I would meet criteria for disability, they have all said "yes, without question." I do hope to still work on some articles, maybe even another book in my early retirement. I still want to contribute and help teachers improve student learning, but we'll see how much I can get done. I will be free from the stress of teaching loads, grading, and the work of scholarly committees. I'll have time to rest, manage my health and try and be able to spend more time with family and friends. 

So, my lovely friends and family, that is the latest! Sorry for making this so long. And thank you all for your love and support.

And so this is Christmas...!

Merry Christmas, 2022!  I hope all of you are enjoying some peace, some quiet, and some enjoyment of each other with family and friends this Christmas season. This is my 2nd blog this year, so I'm doing better with that, anyway, than last time.  

Our final day for turning in grades was December 22nd just before midnight, and I got them turned in around 9:15 pm that night.  Wahoo!  This semester was a bit difficult in that regard because I was made Assistant Chair this year (in charge of scheduling classes for 55 full-time faculty and 9 programs/majors), and also the co-chair of the tenure and promotion committee which had a lot of work to do. Whew. The department needed the help, and I am happy to help, but it has been a difficult semester in many ways. 

There have been a few other snags:  Last year, I had an operation for an umbilical hernia. It was getting increasingly uncomfortable, so we had to have it fixed. It wasn't too bad apart from waiting for hours for the surgeon to arrive.......I must love hernias, because this year I had to have more surgery for bilateral (both sides) inguinal hernias!!  There is a great story here.....

 

 

Ready? Earlier this year, for several months I thought I was just getting some type of cramps or pulled a muscle, but the pain was slowly getting worse. During my annual physical exam, I told my provider that I was having pains, and he checked and said we needed an ultrasound. So we went and got that, and they said I had these blasted hernias! I asked if I needed surgery and the answer was it depends on how much it hurts or interferes with things. Well, as time went by it hurt more and more and was interfering in my ability to work and do things. So, back to see the surgeon. He agreed surgery would be helpful, but when I reminded him of my myeloma and low platelets, he said, "No, you probably need robotic surgery, and I don't do that, but we'll refer you to the person who does."  Which he did. Things were getting worse now, so we scheduled as quick an appointment with the new surgeon as we could.  

Patty went with me, and we were waiting in the exam room when he came in, medical student in tow. He was wearing cowboy boots, funky glasses, western shirt, and a long ponytail. He looked like a country singer taking a break during a concert! But he was very nice, examined me and said, "Yup. You need to have those fixed, and we'll do it via robot to reduce the blood problem. Let's get you scheduled." They also would  give me two units of platelets, which to be honest I started looking forward to. But I realized I would have to wait for weeks or months to get the surgery scheduled, meaning I'd have to live with that pain even longer. Then Patty said, "How about tomorrow?" The surgeon gave us a look and said, "No, no, I'm sorry." Then he paused and was thinking. He looked at us again and said "Maybe!" We went out and spoke with the nurse, they got things going, and we were scheduled for surgery the next morning. Yowza. 

I didn't even get to me the robot who worked on me; I called "The Non-Terminator". But recovery took a bit, and I still have some significant inflammation going on, but the pains I was having are gone, and I'm feeling better.  So Patty has taught me a good lesson -- don't assume, and it is worth asking about tomorrow when you're talking to a surgeon!  

So, yeah, this has been quite the summer and then fall semester.  

 So what's the latest on the cancer?  

I had my 2nd review this year in November. Across many of my labs, not much different:  low white cell counts, low red blood cell counts, low hematocrit (volume of red blood cells to total blood volume), platelets back to their terribly low 53 number (remember the bottom of the "normal" range is usually 150.....). So those two units are gone now.  :(    Kappa light chain ratio to lambda chains abnormally high, but not the highest it has ever been. The worst result?  My M-spike, the main marker we watch, is up to 1.4.  When I was first diagnosed it was 1.7 back in ol' 2014.....it was at 1.9 when I began chemotherapy. 

To think of it another way, over the past 7 years, my M-spike has very slowly risen from 0.3 after my transplant to 1.0, making for an average slow increase of around 0.1 per year. This year, 2022, it has gone up 0.4 total in one year -- 4x the rate from before. Yes, we are still below when I was diagnosed which is a miracle, but it was 1.2 in May and 6 months later, 1.4.  If put this on one of my usual curves, that's a pretty steep rise. If it keeps this up, next May, we'll be at 1.6......

As I said in my May blog, I can feel it. Yes, this has been a very stressful 2nd half of the year and that could be contributing to this, but......I'm more tired than I have been, and especially -- my back is hurting much more than it has for a long time now. I don't know if I'm getting turmors back in my lower back like I had before or not, or if this is just from sitting too long trying to get final papers and projects graded, but I'm in more pain. So, here's how I feel:

We'll see what happens in May. In the meantime, spring semester should be a bit calmer. I'm teaching 3 sections of the same class with at least two of them livestream which reduces my grading burden (no online discussions). We still have some tenure-related issues to go over and write about, and scheduling won't be any less, but I think I'll make it. So prayers and best wishes are ALWAYS appreciated, and I thank you all for the love and support I receive from you. In the meantime, I wish you all a wonderful Christmas day and a Happy New Year celebration. Thinking of the birth of Jesus Christ helps me to remember to be humble and to appreciate every blessing that comes to us. Merry Christmas!

Searching for the Balance

 

Welcome back, friends and family! It has been about 15 months since my last update. 

In searching for a theme, I settled on the idea of how I continue to try and find some way to balance my life as things continue to progress over time. Let me start with some good news.  

In March, I had my 7th birthday, celebrating my triumphant return home from the hospital seven years ago having defeated cancer!  Wait...hmmmm. Maybe it wasn't quite like that, but I am still alive after seven years following my transplant, so that IS good news, right? I am still working, we are enjoying redoing our entire yard right now to reduce water use and change its look, and we just found out that we have a new grand baby who will be joining us in several months. I also finished my sabbatical having accomplished a fair amount, although not all that I had wanted to, and me and my loving wife are still together after 37 years. These are all awesome, and I am grateful for all of them. 

So what's the latest? 

Well, not as good as I had hoped. My latest blood draw, from the start of May, showed an M-spike of 1.2; this is the highest since I was diagnosed which was 1.7. After my transplant (2015), my M-spike was 0.3, so I have moved a bit up and am getting closer to when I was diagnosed. On the other hand, my annual MRI in early January did not show any major tumors yet. Wahoo!  

On the other hand....my white blood cells counts in November and in May were both the lowest they have been in years, my red blood cell counts were stable between November and May, but also the lowest they have been since 2019 (that's as far back as I can easily see on my tracker right now); the bottom of normal is 4.7 and my counts were 3.86, and my average since my transplant is 4.14 over the years. So, my ability to fight off infections is less than it has been, and my anemia is worse than it's been for a long time. Maybe this will help:  

Lab                    7 year average            Bottom of "normal"                Me in May, 2022

M-spike                    .84                                    0.0                                            1.2

White cells             3.06                                    4.3                                            2.16

Red cells                4.14                                    4.7                                            3.86

In my last blog, I also noted that we have been watching my light chains from my kidneys. Well, those haven't looked that good, either. Focusing mostly on the ratio because that is what the doctors say is the most important indicator, my last two chain labs show 1.79 ratio or above; the top of normal is 1.65.  So we are going to keep watching it. 

Here's the other thing: I can feel it. I am more tired than I have been in a long time. I am having, as a result, more difficulty concentrating especially as the day goes on. This is with 7.5 - 8.5 hours of sleep a night. My back hurts more than it has in a while, and I am having more "side" problems than I have in years. 

I made a big decision recently -- while I love, love mentoring students in research and helping them develop the powerful skills that will help them in their futures, I don't think I can do it anymore. I took on one more student this summer (just one) and will no longer be mentoring students after I finish with the projects I have going on right now. I will still do scholarly work -- but more as a consultant, editor, and not as the person leading the project. I have also gone to my department chair and dean and asked for support with a student Instructional Assistant every semester and possibly reducing my work load a bit (this is still being evaluated on the basis of health accommodations). 

I am very grateful for my life, my Savior, grateful to my wife, grateful for my seven years and hopefully more to come, grateful to my department and colleagues and UVU for their support. I could not do what I am doing without all of that support. But it was time to step back, acknowledge my body and how I'm feeling, and to shift towards those things I can still do well and get done. I don't necessarily believe right now that it will get better, although in my 7 year wait, there are SO many more options once I do have to go back on meds -- and I am grateful for that, too, and for my doctors who track and watch my health. This is my search for balance -- to find a place where I can try to get the support I need to carry on and continue to contribute to the world while acknowledging the reality of my situation. 

As the British government said in its poster before WWII:  Keep calm and carry on!  And thank you to all of you reading this -- I love you and am grateful for your support as well!  I hope to give you a next update a little closer in time to this one.   Wish me luck!  

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.