Blog post 3/11/2017 – Updated 5/24/2017

Here is what I wrote on 3/11/2017, 2 ½ months ago:

Well my last post was over a year ago – on 2/13/2016.  Originally I was not posting because there wasn’t much going on.   There has been some stuff going on recently, but I haven’t posted because I wanted to talk about the resolution of the stuff.  But things are still unresolved, so I’ll talk about what is going on anyway.

First, here is the graph of my numbers, yet again:

 

The red line is Free Lambda.  It starts at the left when my disease was diagnosed in June, 2012, at 1329.  The normal max is 26, so that was 50 times the normal max.  The treatments in summer, 2012, quickly brought things back to normal.  Then in the summer of 2014, the readings began to rise again.  Treating it with Revlimid stopped the rise, but did not send it back down.  Then in early 2015 it rose dramatically again, in spite of the Revlimid.  So Velcade was added, and that brought it down dramatically.  I’ve been on weekly Velcade ever since then.  The Revlimid continued as well until last summer.  Since it was ineffective by itself and since it costs $10,000 per month (5% of which I have to pay, but that is still expensive), I asked why continue it.  So it was dropped in June, 2016.

The above graph is just too small to understand the details.  But it gives you the overview of the 2 major bouts I’ve had with rising Free Lambda numbers.  As you can see to the right, the numbers are on the rise again.  So let’s look at the data since last June.  I’ve removed the Free Kappa values and max, as Free Kappa is not a problem right now.

  

Free Lambda bounced around, mostly going sideways last summer.  It was above its normal max, but not alarmingly so.  Then in November it started to climb.  Back in 2014 when it reached 170, Dr. Levine started to deploy medicines against it.  It reached 183 in mid-December.  The decision was made to reinstate the Revlimid, on the hope that the combination of Velcade, Revlimid, and Dexamethasone would have – combined – effects that the drugs alone were not having.  But then the drug took a while to order, as I was changing Medicare Part D insurance companies, and the old company tried to evade paying for a prescription late in the year.  Once I had the Revlimid, the decision was to delay taking it until we returned from our trip to Tanzania (January 8-22), as a nasty reaction in the middle of nowhere was not something to be desired.  Then when I returned I was still on the anti-malarial drug, which gave me a bit of a rash.  Finally, late in January I did start the Revlimid.  But then I got another rash, and they suspended the Revlimid for a week.

So the latest reading is 270.3, which is 10X the normal max.  But I am feeling quite well.  No symptoms, and I am able to run every morning – although at a crawl’s pace.  Funny thing.  Back in early 2015 when I was on Revlimid alone, I thought there were minimal side effects.  But now that Revlimid has been added to a continuing regime of Velcade, I can see that Revlimid itself is the cause of many side effects.  The soles of my feet feel as if they have double calluses, and I need to take some sennocot every day to facilitate bowel movements.  But if the combined drugs bring the Free Lambda back down, those side effects are minimal.

This is far from the end of the story.  We don’t know what the next Free Lambda reading will be.  We are on pins and needles until 3/28 when the next test will be taken.  If a dramatic turn occurs, we will either continue the current regimen or drastically change it.  The good news is that there are lots of choices for new drugs to take.  You don’t want to change to the new drugs too soon, as Multiple Myeloma is continually evolving, and you want to have as many treatments as possible still effective against the disease.  This continuing mystery is why I haven’t written this blog post sooner.  Unlike Paul Harvey, I cannot provide the “rest of the story”.

Changing the topic: the Greg’s Legs team will be running/walking in the Multiple Myeloma Research Foundation’s Boston 5K on April 30^th.  We have done this race for the last 3 years, and it is a good time.  If you are in the area and up for some exercise, please join us.  My personal website is walkrun.themmrf.org/Boston/GregsLegs.  You can see last year’s team on the team page: walkrun.themmrf.org/Boston/Team/View/32396/Gregs-Legs.  You can register or donate at either site.  The whole point is raising money for research into Multiple Myeloma.  Last year’s race raised over $500K, and this year’s goal is $540K.  The MMRF runs 11 such races across the country and last year raised $2.9 million.  All of which was put to good use, as last year 4 new MM drugs were approved by the FDA.  Since there is a good chance that I will need to change to new drugs to fight Multiple Myeloma soon, I am extremely grateful that the MMRF has led the way for drug companies to pay attention to this disease.  MM might be the second most prevalent blood cancer, but with only 20,000 new patients per year, until the MMRF came along and organized patients for clinical trials and provided incentives for directed research, the drug industry was ignoring MM.  If I had gotten MM 30 years ago, I would not still be writing this blog, as the average life expectancy then was 2 years.  So, in my humble opinion, this is a good cause and one that I urge you to support.

Continuation on 5/24:

Well the race on 4/30 is long over.  I actually did quite well, finishing in 33:30, a 10:48 mile pace.  Once again I got the first place medal for men over 70.  There were 6 of us.  Barbie also got the first place medal for women over 70, but there were only 3 of them.  Our team raised $8,110, which is far more than we’ve ever raised in the past.  A big THANK-YOU to everybody who donated! The event raised over $640,000, which makes it the highest fund raising event in the MMRF’s roster of athletic events.  I’m sure the MMRF would still accept donations, but not in our team’s name.  But don’t let that stop you!

Now I can tell you the rest of the story.  Here is the latest graph:

On 2/28 the Free Lambda was 270.3, 1028% of the max of the normal range.  On 3/28 the reading was basically the same: 268.3 or 1020% of the normal max.  Then on 4/25 it had a major rise to 411.7 or 1565% of the normal max.  The latest reading is 419.7 or 1596% of the normal max.  When I meet with Dr. Levine, my oncologist, the latest reading is not available, so any decisions are made based on data a month old.  The decision was made to switch from Velcade to Ninlaro, a successor drug to Velcade.  They are both proteasome inhibitors, which means they work by making it so the Multiple Myeloma cells cannot dispose of their wastes.  So they die from their own pollution.  I asked Dr. Levine why Ninlaro would work when Velcade did not.  He said it was in the same class, but not exactly the same.  At any rate, we will soon find out.

Ninlaro is a pill, not a shot.  So I don’t need to go into Beth Israel every Tuesday any more.  But I do have to go through a telephone survey so that the drug company can be sure I know how to take the medication and how to act while on it.  Plus I get to pay for it.  3 pills cost $10,227.44, of which I get to pay $511.37.  So is it worth that much to avoid 3 round trips into Boston?  It certainly is if it brings Free Lambda back under control.

So I am now on a new regimen.  I take Ninlaro for 3 Tuesdays, Revlimid for 2 weeks daily starting on the Tuesday I take the first Ninlaro, and then Dexamethasone on the Tuesday I take the Ninlaro and the next day.  I have a weekly pill array that lets me figure all this out a week at a time.  Actually, I take 11 pills on a normal day, and then extras on the days I am taking any of the 3 described above.

I looked up Ninlaro on the internet to further explain how it works.  But the thing that caught my eye is a study that determined the relative progression-free survival rates:

NINLARO has been proven in a study to help some patients live longer without their multiple myeloma getting worse*

In a study of NINLARO, the NINLARO regimen (NINLARO+lenalidomide+dexamethasone) was proven to work in some people whose multiple myeloma had come back or stopped responding to prior therapy.

This study evaluated progression-free survival (PFS), the length of time during and after treatment that a patient lives with multiple myeloma but it does not get worse.

Treatment with the NINLARO regimen increased the median progression-free survival by about 6 months

20.6 months with the NINLARO regimen

14.7 months with the placebo regimen

 I'm not sure how to read the results of this study.  Will I be good for 20.6 months or 6 months?  I don’t think that I would have the luxury of trying a placebo regimen, as my MM seems to be on the edge of breaking out already.  But if people using the Ninlaro combination get a year and 8 months before things start to turn worse, then that is a good result.  We’ll see.

[I will soon provide another blog post, as 2 days after starting Ninlaro I had a major medical event which resulted in the suspension of my Multiple Myeloma treatments.  More to come soon…]

A New Normal

I have not posted to this blog for a long time because I kept waiting for dramatic news to announce.  But no such news has happened, so maybe the non-news is worth explaining.  Here is a picture of my key blood readings since June of 2012:

The blood readings are on the logarithmic scale to the left; the medicine dose levels are on the normal scale to the right. 

I was diagnosed with Multiple Myeloma in June of 2012, with a Free Lambda reading of 1329.  That is against a normal max of 26.3, so I was 50 times the normal max.  Multiple Myeloma is a cancer of the plasma cells that generate blood in the bone marrow.  There are several different types.  My flavor of Multiple Myeloma results in the overproduction of the Free Lambda component of white blood cells.  Normally a white blood cell is created by joining 2 light chain cells with 2 heavy chain cells.  If the process goes wrong as it has in my case, it results in the overproduction of one of the light chains.  The light chains are called Free Kappa and Free Lambda.   In my case, Free Lambda is over-produced.  If left unchecked, the Free Lambda cells go berserk and change the composition of the blood, resulting in all sorts of damage.  In my case the primary symptom was the leaching out of calcium from the bones, resulting in compression fractures of my vertebrae.

In the summer of 2012 the combination of Velcade, Dexamethasone (a steroid), and Revlimid quickly brought the readings back to normal.  Then in November, 2012, I had a stem cell transplant.  A neighbor who contracted Multiple Myeloma several years ago had a stem cell transplant and then was in remission for 6-8 years.  So I had expectations of the same.  Things were normal until the second half of 2014, when my Free Lambda rose to dangerous levels.  So the disease was back in just less than 2 years.  Rats!  The doctors put me back on Revlimid, which initially brought the readings down.  But then Free Lambda spiked to 988 in April of last year, so they resumed the initial treatment of all 3 drugs.  This resulted in a dramatic decline, although not actually down to the normal range.  Since June 2015 the readings have ranged from 28.5 (8% over the normal max) to 65.9 (150% of normal max).  These blood tests have a high level of noise, so bouncing around is to be expected.  Since June of last year, there have also been an excess of Free Kappas.  No known reason why.  What really makes it confusing is that one of the measures they follow is the ratio between Free Lambda and Free Kappa.  Since they are both a little high, the ratio is just where they like it.  Go figure.

Needless to say, I was hoping the tests would get back down to the normal range.  They haven’t, but the doctors do not seem to get concerned until they rise to 5X the normal max.  So, I am on an ongoing regimen of 2 weeks of all 3 medicines, followed by a week of recovery.  I am feeling fine.  No symptoms of the disease itself.  Just side-effects of the medicines, primarily neuropathy.  Neuropathy is a result of damage to long nerves, so you get odd sensations in your feet and hands.  My feet feel as if my soles are doubly or triply callused.  Or like I am walking on marbles.  My hands only occasionally tingle, but I drop things far too often.  Was I always dropping things?  I cannot recall.

The strategy is to continue the current regimen of drugs until they stop working.  The pattern is that the disease eventually figures out a way to elude whatever drugs have kept it in check.  Clearly back in April of last year Revlimid alone ceased to be effective.  I asked my oncologist why he continues to prescribe it, and he said the 3 drugs in combination generally are more effective.  I am now in the stage of the disease called relapsed Multiple Myeloma.  That is to say the disease has come back after a stem cell transplant.  When it evolves to shrug off the initial treatment, then it becomes refractory Multiple Myeloma.  The good news is that there are now many alternative drugs available for treatment once the current drugs become ineffective.  Just last year 3 new drugs were approved for general treatment by the FDA.  Your support of the Multiple Myeloma Research Foundation by sponsoring runners in the Boston Spring 5K contributed to these advances.

So the goal is to make Multiple Myeloma a chronic condition, not a fatal disease.  Which is to say, the goal is to keep MM at bay long enough for something else to get you.  After all, we are not given a perpetual ticket to this life.  So enjoy it while you can!

P.S. The MMRF Boston 5K this year will be held on Sunday, May 1.  Those of you in the local area who would like to run or walk, reserve the date.  Last year we had 15 adults and 5 kids in strollers or on bikes.  Let’s see if we can have an even bigger team this year.  Those who can’t take part but would be willing to support those who do, expect to get an email once I have signed up.

Summer Service Musings

I participated in a summer service at our Unitarian Universalist church in Stow on August 16^th.  Actually, I helped organize it.  I invited several people who have had cancer to share their thoughts with whoever attended the service.  In the end only two of us actually presented, which was a disappointment, but allowed the two of us to go into greater detail.  Here is what Johanna Pyle, a Breast Cancer survivor, and I had to say.

Survival Guide to a Cancer Diagnosis

August 2015

As many of you know, I spent the last calendar year dealing with a diagnosis of breast cancer.  To this day, I have trouble calling myself a “survivor”, because although my treatment was not straightforward, I never had to endure chemo or radiation, and there was never any question about the outcome.  There are so many, many people who have had to endure so much more difficult treatment, with the question of survival not necessarily assured.  Still, I have a new body as a result, and any journey through the Land of Cancer is never easy, no matter what the circumstances may be.  I would like to share with you some of the insights and lessons I have learned, a “survival guide” if you will, perhaps a “pay it forward” gesture in a small way.  Going through cancer has allowed me to gain an exquisitely heightened appreciation of all the love and blessings that I have in my life, and that was the most surprising part of the whole journey.  I would never wish a diagnosis of cancer on anyone, but some of you are surely and sadly going to receive that diagnosis in your lifetime.  And in many ways my life is better for it, and a large part of me is grateful for having gone through it.

Part I:  Getting the diagnosis

1. Breathe:  I will never forget the phone call in which the surgeon told me that the biopsy came back showing cancer.  This sounds like a cliché, but I truly felt like time stood still, and that the air had been sucked right out of me.  I was totally unprepared for this, having had “lumpy breasts” all my life and always had negative biopsies.   After she talked for a while, and we made an appointment for the next day to go over the pathology report, I hung up and sat on my couch for a long time, awash in a feeling of panic and despair.  My first thought was “I’M ALONE”, because I don’t have a spouse or partner in my life, and it took me quite a while to get past that thought process.  But finally, I remembered to take some deep breaths, and slowly it came to me:  I’m not alone.  I have 3 wonderful sisters, countless friends and several “best friends”, and I have this church.  So I picked up the phone, called my sisters, and started the journey.

2.  Reach Out:  My initial instinct was to keep the diagnosis a secret from most people.  I’m not completely sure why,  perhaps because talking about it made it real, maybe because I felt somehow I was to blame, but for whatever reason, it took me a while to share my “news” with people.  Telling my two daughters was by far the hardest part.  But once I started telling people, I began to find out many important things such as how many people have dealt with this and had so much wisdom to offer, how there exists such a wonderful place as The Healing Garden right in my back yard, and that it WASN’T my fault, etc. (although, secretly, I still blame the fact that I heated up so many leftovers in Tupperware..sheesh.) Reaching out to people meant the difference between trying to appear strong and composed in the face of total terror, and finding people who knew exactly what that terror felt like and who helped me gain control over that terror.  And more importantly, I found out how many people were there to help me go through this, which again reinforced the new understanding that I wasn’t in fact alone.

3.  Take your time to process information:  Although some people don’t have the luxury, there was no particular hurry for me to make any decision.  The first course of treatment, lumpectomy and radiation, was an obvious and clear choice for me.  After the second surgery, where they STILL didn’t get clean margins (happens more often than you think – What? on Grey’s Anatomy they always get clean margins!) I was faced with a more difficult decision.  Try for a third time to get clean margins?  Have a single mastectomy, double mastectomy, reconstruction, what kind of reconstruction, no reconstruction but beautiful tattoos instead?  Again, referencing #2, I spent a long time reaching out to people who had gone through this, and listened and pondered, and pondered some more, relying on my long-standing mantra that “the answer will make itself known.”  And eventually, it did, and I had a single mastectomy with reconstruction.  “..Don’t let anyone bully you into scheduling surgery unless it’s a true emergency.  Say you need at least a day to think about it.  Talk to whomever you need to, in order to process as much as possible about what’s going to take place.  Nobody can take your power away unless you allow them to do so.” -- It’s Just a Word, Elizabeth Bayer

 4.  Trust your instincts and make sure you are heard!  Once you have decided on a course of action, the next step is to decide on a team of doctors.  This was a really difficult step for me, because all of the doctors seemed to know a whole lot more than I did, and they all came with great recommendations, etc.  Plus, I didn’t want to offend anyone J But it came down to one thing:  who listened to me, and made me feel heard?  What did my instincts say?  When I thought in those terms, the answer was clear, and I was able to both decide on a course of action, and make great choices regarding doctors. 

5.  Get help formulating questions.  One of my greatest sources of support was my sister Tory, who happens to be a nurse practitioner.  Before I met with several different teams of doctors and was trying to decide what to do and who was going to do it, she and I made a phone date to formulate questions.  I did this with a couple of other friends as well, and by the time I went shopping for doctors, I had an organized, double-spaced, printed out list of questions that addressed all my confusion (i.e. what does X mean?) and concerns, and allowed me to take notes with each doctor for later comparison.  Also, bring someone you trust with you, to be an extra set of ears.  This is very important!

Part II:  The surgeries.

6.  Tolerate the unknown:  As Rachel Naomi Remen said in my first reading,”...Wisdom comes most easily to those who have the courage to embrace life without judgment, and are willing to not know, sometimes for a long time. “For me, this meant again letting go of control, because as I entered into the biggest surgery, the single mastectomy, I had very little knowledge really of what was going to come after.  I had to simply trust that I made good decisions, and leave the rest up to the doctors.  I didn’t know how much pain to expect, what I would look like, and how long it would take me to be back to my “old self”.  It really required me to live in the moment, take each day as it came, and let the journey unfold.  And, as I got better and back to my routine, I had to think of that in the bigger sense as well.  I didn’t know if or when I would meet that significant someone and how they would react to the changes my body experienced, or whether or not the cancer would come back.  There are so many things we just can’t know, and I have become much more willing to tolerate this state of unknowingness.  And, reducing any specific expectations made adjusting to the resulting reality that much easier.

7.  Think positively in every regard:  Prior to my first surgery (and now, I am up to five…), I met with a psychologist who specializes in preparing people for surgery.  She helped me develop a meditation that involved visualizing in a very positive way what I wanted right after the surgery, a week later, and then several months later,.  I also wrote healing statements with her, which again stated things in a very positive manner.  Not, “I don’t want to feel pain”, but “when I wake up I will feel comfortable and the nurses will be helping me.”  The nurses in the operating room read these statements to me while I was under the anesthesia. She also encouraged me to send out a request to friends and family to send me their healing thoughts and prayers as I went into the surgery.   At first I was pretty uncomfortable with this, feeling like I was drawing too much attention to myself and putting a burden on my friends and family.  But in every case, I have had a remarkable outcome with very little side effects from the anesthesia and speedy healing.   And knowing that so many people were holding me in their thoughts and prayers was an incredible, wonderful feeling.  

8.  Let go of “shoulds” – make life as easy as possible, and ACCEPT HELP!  This was very hard for me to do.  I had planned to accomplish a number of things during the upcoming school year, and was reluctant to let anything go. (I.e. working full time plus tutoring on the side, teaching a graduate course, singing in two choirs, etc.)  Needless to say, it became very clear that the only thing I really had to do was go through this Cancer Journey in the best way I knew how, and that included letting go of all the “shoulds” and sources of stress in my life.  There were still many things I wanted to do, but I was the only one telling me what I had to or didn’t have to do, and it was incredibly liberating.  And as a very good friend said to me, “don’t say no to anything!”  People enjoy helping other people, and if there was ever a time I needed help, this was it! The combination of relieving myself of stress and accepting help was a very important part of my healing process.  Which leads me to #8:

8.  Allow yourself to heal: Again, this was hard for me.  In case you haven’t noticed this about me, I have very high expectations of myself, and I’ll be damned if I was going to let a little thing like breast cancer get in my way.  But after the surgery, I wasn’t allowed to lift my arm above my shoulder or lift anything heavier than a gallon of milk for a month.  That felt like a looooong time to me.  But as I’ve said to many people, I was finally able to “embrace my inner couch potato”, and slip into what I came to call my healing cocoon.  Many people have commented that their brains are the last thing to heal, and in fact I had a lot of trouble after all the general anesthesia with word finding skills.  My daughter likened it to Mad libs:  “Sarah, can you get me the […um…noun] that I left in the [...um…another noun.] “  I was quick to get frustrated with my temporary loss of brain power and limited mobility. But many, many people kept telling me, “you have been through a big deal, you are allowed to have healing time.  Tolerate the unknowing of when you will be completely healed, and allow yourself that time”.  Easier said than done, but looking back, I was glad to have people saying that to me over and over again.

9.  Expect that your life will be different, no matter what the outcome:  As I approached the reconstruction surgery, I kept tormenting people like my sister with, “I wonder what I will look like??  I wonder what I will feel like??”  She finally said, “Look, no matter what you will look like, it will no doubt look and feel different from what you are used to or to what you are expecting.”  This was very true.  There is no way for anyone to know what the future will hold, and in this case, it was clear that it was going to be different, no matter what.  I had to really think about that, and understand that yes, it was going to feel different and that was ok.  It may be better, who knows?

10.  Always remember that you are surrounded by love.  I have never felt so loved in all my life.  The thoughts, prayers, cards, meals, prayer shawls, books, music, movies, rides, and company that so many people shared with me were in unending supply.  I have always believed that showing and feeling love was a critical component to a good life, but having cancer truly brought that home to me.  “The realization struck me that the love is everywhere for everyone, all the time; it’s just that most people aren’t looking for it, so they don’t [know] it exists.  It does, and once you know it, you will see it all the time.”  -- Elizabeth Bayer  I knew that love existed, but I know now that I never truly understood the power of love.  It is transformative and healing, and if it took cancer for me to gain that understanding, then I am grateful for it.  I want to leave you with some final thoughts from Elizabeth Bayer:

“Love is everything, yet adversity is the greatest teacher.  So love adversity, and know that there are always gifts.”

“It can show you how many people in the world love you.  It can teach you compassion, for yourself and for others.  It can put you in tune with the strength you never knew you possessed.  It can propel you to do all the things you thought you had time for, but never did.  It can help you cherish the present moment.  It can assist you in offering forgiveness and being forgiven by others.  It can teach you humility and gratitude.  It can help you ask better questions.  It can move you toward a life with more meaning.  It can raise you up to a higher level of spirituality, even if that was never part of your life.  It can help you let go of things that are not truly important to you.  It can make you a better person, for yourself and the world around you” -- It’s Just a Word, Elizabeth Bayer

“In my moment of greatest vulnerability, I learned to embrace the journey, so I could truly heal and grow.  It doesn’t mean that there haven’t been moments that suck – there have been, most assuredly.  But I’ve learned about the power of will and intention, and how to carry faith deep in my heart.

From It’s Just a Word, Elizabeth Bayer

My contribution.  You may recognize the first part of it as having been part of this blog back in 2013

The Unexpected Benefits of Having Cancer

(Written Spring 2013 in the aftermath of a
Stem Cell Transplant November, 2012)

One.  Cancer cures you of any sense of invincibility.  You, who may have been an aggressive athlete, who may have been a competent professional, who may have been a leader in your town, are suddenly unable to do much more than get to the bathroom and keep yourself clean.  You who excelled at gathering and retaining information, are suddenly barely able to read more than a page or two, and then often with next to no comprehension.  You, who always cared for and provided for others, are now one that others have to take care of.  Yes, you never tried to lord it over others, and yes, you tried to act like an ordinary person, but suddenly you realize that your self-image was based on the ability to get things done, to provide, to care for others.  Without that capability, who are you?  What do you bring to the table?  Forget about invincibility.  Your essence now has to embrace vulnerability.  You have to accept that you are a mere mortal.  You were all along, but cancer has a way of hitting you upside the head with that fact.

Two.  Cancer opens you up to emotional expression.  When you are lying there 9 days after your stem cell transplant, when you have no immune system and your body is attacked by a raging infection, your gratitude that the medical staff have the tools and the insight to pull you through, leaves you in tears as you try to thank them.  You are unable to say thank you to your favorite nurses without springing massive eye leaks.  You have found out what it means to “walk through the valley of the shadow of death”.  When you tell your family what that felt like, you are overwhelmed by the wonder of having survived the ordeal.  Maybe you thought you had an appreciation for the value of life.  Now you know how truly glorious life is.  Nothing like almost losing something to awaken you to its value.

Three.  Cancer makes you realize how key a role your family members play.  The spouse who drops everything to be at your bedside and then turns the house upside down to make it germ-free enough for an immuno-compromised person to come home following a stem cell transplant.  The daughter-in-law, who happens to be a doctor, who interprets all the medical terminology and explains the doctor’s strategy because she has access to the doctor’s notes.  The siblings who come in from across the country to share your experience.  The kids who take turns being with you because they have young kids, and nobody under six is allowed on the hospital floor.  Family is key.

Four.  Cancer makes you acutely aware of all those people who really want to help you.  Sure you had teammates, co-workers, social acquaintances, and members of the various communities you belonged to.  But you only ever expected family to rally round when the going got tough.  But all those different people helped out driving, making meals, doing the chores you used to do, caring for the dogs, …  All those different people responded to the LotsaHelpingHands appeals.  You may have thought you were a lone ranger, but in fact, you were a mouseketeer.  All those other mouseketeers are right there to help you and to plug the gaps your disease has created.  They say it takes a village.  And that is not just to raise a child.  It is to respond to one laid low.  Another nuance to add to your conception of yourself.  Someone who has lots of friends willing and able to help out in a pinch.  You never knew!

Five.  Cancer makes you appreciate the caring professions: doctors, nurses, people who scrub the floor.  The list starts with the doctors.  Maybe they are the ones who restoreth your soul.  But the ones who really matter are the nurses.  They are the rod and staff that comfort you.  They are there to help.  That’s their job!  And they do it so well.  The little tricks they have from seeing how others cope, such as the lotion that relieves your raging rash.  Or the cream that makes bi-hourly diarrhea bearable.  Or the hot blanket that brings you back from the bone-crushing shivers.  And unlike the doctors, whose first names you only see on medical bills, you only know the nurses by their first names.  Is this an attempt at anonymity?  Or is it a shield so that you can’t act on your crushes in the outside world?  Whatever, the nurses are your connection to humanity that pulls you through, that gets you through the valley.

Six.  Cancer makes you appreciate medicine, both the science and the practice.  You are exposed to the practitioners who decide what you have and how to treat it.  They carefully feed you enough information so that you can understand and cooperate in the treatment.  They assess your physical symptoms throughout your treatment, and react to how the disease is responding to their treatments.  But you realize that there are many aspects of the medical profession that you never see, but which you totally rely upon.  Pathologists read your specimens and determine if the key markers are going in the right direction.  Research scientists perform the basic research that leads to advances in treatment regimes. Clinical doctors perform the studies and clinical trials that demonstrate the effectiveness of new treatments.  Engineers and technicians create the machines that see into your body, measure the key characteristics of your blood in 45 minutes, give you color images of your heart and lungs in motion, and separate the elements in your blood so that stem cells can be isolated.  You owe your continued life to both the science and practice of medicine.

Seven.  Cancer lets you know how much it helps to express yourself in writing.  Beth Israel Hospital publishes a Book of Writings each year with writings from various cancer support groups.  As many others who have written for the Book of Writings, the written word helps you form vague feelings into crystalized emotions.  You have never been through such an experience, and you want to share that experience with others.  Writing helps you share, and in doing so, helps your own realization of what you have been through.  It may still amaze you that people care to read your drivel.

Eight.  You have reasons to be thankful.  You may have cancer, but there is always someone who has a worse case than you do.  During my stem cell transplant, I heard of two people who had stage 4 cancers.  Before I got home they were both dead.  As you get up off your hospital bed and begin walking slowly around the ward, you see others at different stages of their treatment, with other types of cancer, and different intensities of cancer.  You may have been feeling sorry for yourself, but there are others far worse off than you.  You may get there eventually when your disease reoccurs, but for now you are in comparative easy street.  So cancer has a way of making you thankful, even in the face of adversity.

Nobody chooses cancer.  Everybody fights cancer as hard as they can.  But you learn something from cancer, and it reveals a good deal about your life that you may have been unaware of.  Let’s hope that those revelations are ones you can live with.

The above was written while I was basking in the glow of having Multiple Myeloma in remission.  I had just had a stem cell transplant and a friend who underwent a similar procedure was disease-free for 8 years as a result.  But my disease reoccurred in less than two years, so the glow did not last very long.  A friend recently asked, are there lessons you have learned from the return of Multiple Myeloma?  Since the doctors are still working to bring the latest outbreak under control, I suspect I am not finished learning lessons.  But here is a shot.

First, there are no promises.  I certainly expected that the stem cell transplant would last longer than 21 months.  I know they said the effects could be from 0 to N years, and N is not yet known because there are people who have not had a recurrence.  But I had expectations anyway.  Getting a near-fatal dose of Melphalan (a derivative of mustard gas), is no fun.  Yes, the stem cells are miraculous in their ability to reestablish your blood-generating system.  Yes, the caring professions are very good at their jobs of pulling you through.  But the basic dose is not something one would undergo for recreational purposes.  Whatever is the underlying cause of my disease must be pretty aggressive to come back so soon.  The doctors say their objective is to find a combination of medicines that keep the Multiple Myeloma under control, to make it a chronic condition, not a fatal disease.  The idea is to keep you alive and kicking long enough for something else to take you out.  After all, we don’t get a perpetual ticket.  If there is a promise, it is that eventually your days will come to an end.

Second, what worked before may not work a second time round.  Cancer is a protean disease that can change over time to overcome the forces arrayed against it.  In the summer of 2012 a three-drug cocktail brought my key marker (Free Lambda) into normal range in 4 cycles.  I have just finished my 4^th cycle of that same combination of drugs, and my latest reading is still 60% over the top end of the normal range.  Luckily there are a number of new drugs that are available when the current drugs cease to be effective.  But you want to keep those drugs in reserve, as they too may become ineffective over time.  You want to have spare arrows in your quiver.

Third, having a compromised immune system is no fun.  I get colds at the drop of a hat.  Or rather, at the sneeze of a grandchild.  The first year after my stem cell transplant I ended up in the hospital twice.  Both times it was not long after spending time with my grandchildren.  I thought swearing off babysitting for grandchildren between October and March was sufficient.  But this summer I got a cold from a grandchild who had barely more than a slightly runny nose.  I asked my oncologist if exposing myself to the kids deliberately would help beef up my immune system.  He said there are 600 rhinoviruses that cause the common cold.  If I have antibodies for 6 of them instead of 3, it won’t make much difference.  So do I have to swear off grandchild babysitting year round?  Or do I perform experiments to see if it is holding them, or reading stories to them, or giving them baths that cause the subsequent infection?  Swearing off grandchildren completely is not an attractive option.  Not an option I want to contemplate.

Overall, I think I still have many lessons to learn from the second stage of my cancer.  The lucky thing is that throughout my recurrence, I have been feeling good.  The symptom of the first stage of Multiple Myeloma was compression fractures of my vertebrae, which aren’t very pleasant.  Luckily, even though my Free Lambda reading got to be 74% of the original reading, I had no symptoms this time round.  Yes, Multiple Myeloma is an incurable, inevitably fatal disease, but so far it has not felt that way.  Multiple Myeloma is like Life itself: an incurable, inevitably fatal condition.

We both thought the service went well, and we both gained tremendously from having to prepare for it.  The people who attended the service had lots of things to say about their own experiences (first or second hand) with cancer and questions about our reactions to our disease.  So overall, it was a good thing.

Hooray for Velcade!

Just a short post.  I am half-way through my second round of Velcade, and the results have been terrific.  Here is the picture:

In September my Free Lambda reading had risen to 170, so they decided to put me back on Revlimid, one of the 3 drugs that worked so well in the summer of 2012.  At the start of November when they started the Revlimid they took another reading, just for a baseline.  It turns out the baseline was 435, what looked like a spike up at the time.  The Revlimid did bring it down a bit, but it mostly went sideways.  Then in April it really spiked, up to 988.  So clearly Revlimid had ceased to be effective against my disease.  Back in June of 2012 when I was first diagnosed with Multiple Myeloma, my Free Lambda reading had been 1300, so this was not that much lower.

My oncologist decided to add Velcade, which attacks the cancerous cells in a completely different way.  It blocks the operation of an enzyme that facilitates the removal of waste, so the cells are overwhelmed by their own wastes.  What a way to go!  At any rate, it has been remarkably effective, resulting in the latest reading of 140, which is the lowest it has been since last September.  That is still 5 times the max of the normal range, but if Velcade's effects continue at this rate, the normal range looks to be attainable.

Way to go Velcade!

That was the race that was

A week ago today 13 of us ran/walked the MMRF Race for Research at Carson Beach in South Boston.  Thanks to all you supporters, Greg’s Legs was the 8th highest fund-raising team, so we had our own tent.  Here are the some of the runners/walkers before the race:

And here are some more of the runners/walkers after the race.

Left to right standing: Andrew Jones, Laurie Proulx, Mary Littlefield, Phillip Elmer-DeWitt, me, Arnie Epstein, Carolyn Zettler, Jack Zettler, Tyler Jones, Jessica Jones (holding Tyler).  Kneeling behind the strollers or in the strollers: Gabriel Jones, Emma Jones (with the hat), Barbara Jones, Margo Jones, Jack Jones, Bridget Quinn, Brian Jones, Brendan Jones.

You will notice that the big difference between the before and after pictures is the addition of jog strollers and a bicycle.  That is because the families with children had trouble getting all the ponies moving early enough to make it on time.  Actually they were at the location on time, but there was a backup in parking, so they didn’t actually make it to the starting line until well after the start.  So far after the start, that the race directors had already turned off the “start” detection function to switch it to the “finish” detection function because the fast runners were within a mile of the start/finish line.  So our boys and their families only had the time since the start of the race, not their elapsed time.

Everybody had a great time.  It was warm enough to run without leggings or a jacket, but the MMRF T-shirt over a sweatshirt was just about right.  There was a good crowd.  Probably 1500 runners/walkers.  We even had a few medalists in some obscure categories:

Margo, who finished first among the above group, came in 2^nd in ladies 65-70.  Greg came in 1^st in men’s 70-99.  [The second place finisher was 5 seconds behind me!]  Barbie was 2^nd in ladies 70-99.  Barbie & I even arrived early enough for me to make the Living Proof photograph.  That is a group picture of all the people at the race who have Multiple Myeloma. 

Multiple Myeloma patients get a special color t-shirt, and I believe I was the only one with a purple t-shirt running the race.  In total Greg’s Legs raised $7,537.20.  That is far more than we have ever raised in the past.  Thank you all very much.  If you haven’t donated, it’s not too late!  The website is still open, accepting donations: support.themmrf.org/goto/GregsLegs.

Meanwhile my own personal bout with Multiple Myeloma continues to have some drama.  In my last blog, I showed the graph of my free lambda readings as of late January:

We were all worried about the spike of 450 and were hopeful that Revlimid + Dexamethasone would bring it under control.  Initially it did bring it down, but then it seemed to bounce around just less than the 450 spike.  Well, Multiple Myeloma and its free lambda readings had some surprises in store:

A spike of 988.4 certainly put the earlier spike of 450 to shame.  And it convinced us all that Revlimid was no longer effective in treating the disease.  I happened to have a pretty severe cold at the time of the 988.4 reading, and my oncologist said that it may have affected the reading.  They changed my treatment to put me back on the 3-drug cocktail that worked so well in the summer of 2012: Velcade, Revlimid, & Dexamethasone.  Basically this just adds Velcade to what I was taking already, but so far the new readings have been significantly reduced.  I have been feeling good, in spite of the dire implications of the free lambda heights. 

The latest little bump along the road happened this past Wednesday.  I noticed that I was peeing wine.  Red wine of a rusty hue.  Again, no pain, but an odd symptom.  I notified the oncology team, who requested that I come into Beth Israel.  I did so, and they took normal blood tests + a urine sample that was still dark.  By this time most of the hospital was shutting down, so they sent me to the emergency room.  Again, more tests and lots of waiting.  In the end I have had multiple ultrasound tests/images of my bladder + kidneys, but they have not found any obvious cause.  The next day everything was back to normal, so they may never know what caused it.  Maybe passing a kidney stone, but usually that is accompanied by pain.

The race was lots of fun, and we raised a good chunk of money for MM research.  My experience with Multiple Myeloma shows that they do not have a cure for it and that the drugs used initially to fight it eventually become ineffective.  So it is important that research identifying new drugs and treatments continue so that there are alternatives when those initial drugs lose their effectiveness.  Thanks to all of you for helping to fund a small part of that research.

Race in 2 Months

Once again on April 26^th the Greg’s Legs team will run in the Multiple Myeloma Research Foundation Team for Cures race/walk in Boston.  Right now it is hard to imagine, as we have more than 4' of snow on the ground.  Here is a picture of me raking the snow from our porch roof.  Note I am standing on a pile of snow at least 6' high:

Much of that snow came down from the roof, but with me standing on it, it is quite compressed.  Quite an impressive amount of snow!  But presumably by April the snow will be gone, and we will have a gorgeous spring morning for the race.  I will soon be sending out invitations for people to join the team or support the team financially.  Thanks in advance for your support.

I haven’t blogged since before last spring’s race.  For most of the time that was because at least in terms of Multiple Myeloma, nothing much was going on.  But that has changed in the last half year.  The blood marker that tracks my version of the disease is called Free Lambda.  White blood cells are built from 4 building blocks.  2 light chains join to 2 heavy chains to create one white blood cell.  Each of the components is built from plasma cells, and Multiple Myeloma causes the production of one of them to go berserk.  In my case it is the lambda light chain that is over-produced.  The normal range for free lambda is 6-26.  Last summer my free lambda went over the top of the normal range, but not alarmingly so.  By September it was up to 170, and my oncologist said I might have to go back on Revlimid to control it.  Before doing that he wanted to take one more test, as he said the test has a high level of inherent variability.  He wanted to confirm that he wasn’t just seeing a series of tests that were on the high side of the variability window.  Well, that final confirming test was 435, so it was indeed confirming that the Multiple Myeloma was back.  Here is a graph of my Free Lambda tests:

Back in June of 2012, when I was first diagnosed with Multiple Myeloma, my free lambda value was 1300 (50 times the normal maximum), so 435 is child’s play.  Still, I’ve been back on Revlimid for 3 ½ cycles now.  A cycle is 21 days of daily pills followed by 7 days of no pills so your body can recover.  So far I’ve not had many side effects from the medicine, which is lucky.  As you can see by the graph, the effect of the medicine has not been uniform.  The initial 2 readings were down, but the third went back up again.  So they added a steroid for the first 4 days of each cycle to enhance the effect of the Revlimid.  The combination appears to be working.

After the last cycle, the doctors were alarmed that my white blood count (WBC) was low.  Apparently this is one of the side effects they are concerned about.  Revlimid is in the same family of drugs as Thalidomide, so they assume it can cause deformed babies.  One is not to have unprotected sex with a fertile female, give blood or semen, or to come into physical contact with the contents of the capsules.  So they delayed the start of the next cycle by a week, and had me come back in for a WBC test.  It was back at a level where they could go ahead, so they allowed me to begin the 4^th cycle.  Here is a graph of my white blood count:

The start of the graph is back in November, 2012, when I was in the hospital for a stem cell transplant.  All your stem cells are blasted away, and your white blood cells only last 2-3 days, so they literally went to zero.  Clearly my WBC tends to be on the low side, but when it was less than half the minimum (1.6), the doctors called a halt.  But when it approached the low end of the normal range (3.2) they said it was close enough to resume the Revlimid.  Generally your white blood cells are what fights infection.  Luckily, I have been quite well this winter.  I have visited the grandchildren, but generally I have kept my distance, as they always have runny noses or sniffles.

The doctors say that I will probably be on a maintenance dose of Revlimid for the duration.  This is a bit of a financial setback, as Revlimid is an expensive drug.  It price is $10,000 for one cycle.  Luckily, Medicare Part D insurance covers much of the cost, but still the first cycle each year ends up costing $2800.  Then you quickly blast through the “donut hole”, and you are in what they refer to as catastrophic coverage.  During catastrophic coverage the patient pays 5% of the cost of the drug, in this case $500.  So each year ends up costing about $8,000.  So whenever Barbie and I have an argument about money, she rails against my cost of drugs.  In my case staying alive is an expensive habit.

Much more interesting news: we now have 5 grandchildren.  Two new baby boys joined the Jones clans in late January and early February.  Gabriel in Vermont and Jack in Jamaica Plain.  All appear to be doing fine, and the families are adjusting to having 2 or 3 children.  Much like 2 or 3-ring circuses.  At least one of the older siblings is just beginning to learn that the world no longer revolves around him.  Quite a shock!  Here is Barbie holding Jack, the new addition to Jamaica Plain:

Right now I am somewhat hobbled because I overdid it clearing snow from our roof here in Stow and helping Brian clear snow from the back porch roof in Jamaica Plain.  But once the bruised back recovers, I will be back out running so that I can at least hobble for 5K on April 26^th.