2020 MMRF 5k

(Greg's son Brian taking over the blog here.)

As longtime readers of this blog will know, Greg organized the team Greg's Legs every spring from 2013-19 for the Multiple Myeloma Research Foundation (MMRF) annual fundraising 5K Run/Walk.  His efforts raised over $48,000.  Thanks to all who have donated in the past, your contributions really add up!

2020 is different in many respects.  This year's 5K will be held this Saturday (9/19) as a virtual event.  The fundraising, however, is real!  Anyone who would like to join the team is welcome to do so, and all are encouraged to support the cause.  

https://walkrun.themmrf.org/boston/Team/View/137414/Gregs-Legs

Thanks to all who have already donated this year, the collective generosity is inspiring!

- Brian

While trying to figure out how much money Greg's Legs raised over the years, I did find photos from the previous events.  Notable is the progression of Greg's disease, each year chipping away at his height and strength.  Running (and often winning his age group and the "survivor" category) turned to walking while pushing grandkids in the stroller, which turned to using the walker and getting pushed.  In spite of pain from spinal fractures and the various other ailments (and the fickle Boston April weather), he never failed to show up with enthusiasm and purpose.  

2013 (blog entry here)

2014 -- no team photos, this is the only one I could track down (pre-race blog entry here)

2015 (blog entry here)

2016

2017  (results mentioned in this blog article)

2018 -- no team photo :(

 

2019 (full album here, pre-race blog entry here)

The End of the Struggle

Hello faithful followers of Greg’s blog,

As many of you may have heard, Greg is now free from the ravages of Multiple Myeloma, having faced this challenge as he did all others in his life – with strength of will and character, with dignity, with curiosity and involvement, with a desire to benefit others by sharing his experience of the disease through this blog.

I have just reread his last blog,  posted July 28, which I composed as he was using his energy for other things. Just revisiting all those terrible conditions he endured in the final weeks makes for incredibly painful reading, and in retrospect, it should have been clear to us all that he was approaching the end of his life.

For those of you who have followed his journey, I include here a letter I sent to friends and family recounting his last few days.

Tuesday night August 4, the decision was made to cease further treatment for Greg’s Multiple Myeloma, and to release him to hospice care at home.  Paperwork delayed his arrival in Stow until late in the evening Thursday, when the ambulance finally arrived.  It was apparent that the more than two months he had spent in the hospital had truly taken its toll, but given that he had always been able to overcome and bounce back from unbelievably poor prognosis in the past, we all expected something of the same trajectory.  But not this time.

Greg passed away peacefully Sunday August 9 at 12:45 pm.  We had all taken turns being with him, night and day, so he was never alone.  I was with him when it almost seemed he tried to speak. Bridget was just down the hall, and together we saw and heard what turned out to be his final breath.  Brian, Andrew and Greg’s sister Margo were right there within seconds. 

We were all — even the hospice nurse who had left just minutes before, and returned for the necessary pronouncement — astonished at how quickly the end actually came.  It was calm.  He did not die alone; he was finally free of the intrusive hospital procedures, which obviously had been sustaining him through these final weeks.  Just Friday night, he made an appointment with a friend to meet at 9 am Saturday to go over what the other fellow needed to know to take over the role of treasurer for the affordable housing projects in Stow.  But by Saturday morning, even Greg agreed the meeting would not be productive.  

This is a very sad moment; but all of us are also very relieved.  His oncologist, Dr. Jessica Liegel, phoned me after she had been informed, and via speaker phone, addressed all of us.  She expressed what an honor it had been to treat Greg, to get to know us all, and how good it was that he got his wish to be home.  The hospice nurse was present during the call and commented that she had never, in nearly 20 years of doing this work, ever heard a doctor call a family like Dr. Liegel did, especially on a Sunday.  Her observation is that we had some special doctor, and clearly a special patient.  You can imagine the incredible comfort that brought to all of us.

The boys will be here for a couple of days, but now I can cancel the interviews I had for home health aids, and be able to move ahead slowly into this next phase of my life.  It will feel very lonely, even though I am surrounded by the best group of people you could imagine.  Brian’s wife Bridget, herself a doctor, was extremely helpful, as was my long time friend Jane, who watched over Brian’s three boys, ages 7, 5 and 3 Saturday and Sunday.  Jane’s husband took them for a ride in his Tesla, which features a “emission app” that does, well, what you imagine what would delight and entertain little boys.  I am so aware of the presence of laughter and youth, even in the midst of a shocking loss. 

Sunday night we celebrated Kevin’s 3rd birthday by being together and remembering many, many things about Greg.  We also all plan to be together at Cow Island the last week in August.  Family is providing the steady, competent help that anyone would be grateful for.  We are also so grateful for the generosity and closeness of the community we live in.  In so many ways, we have been blessed.  Greg should feel happy about the legacy of good works and good will that he leaves behind.  We all just wish we had been able to have our healthy, strong athletic Greg for many more years.  The cliche is that it takes a village to raise a child; as we know, it also takes a village to ease the passing of one of its most esteemed and beloved members.

Barbara

With a few days to absorb the rather astonishing events, I can see what a gift Greg gave us all.  He made it home.  He was fully conscious and recognized where he was and whom he was with, until about mid-day Saturday, when he slept more and more. But even Saturday night, he was responsive and helpful as much as he could be, when Andrew and I had to deal with some issues during the night. And he slipped away so quickly….no fight.  He spared us days or even weeks of our agony, watching him struggle.  He did not struggle and he gave us a gift of a peaceful passing, considerate to the end.

The weeks since his passing have been busy with family and dealing with many legal and financial issues that accumulate over a 49-year marriage.  I had hoped that Greg would realize how he was recognized and valued for the many ways in which he served the community – not just the town of Stow, but many other “communities”, such as the Friends of Nigeria (Peace Corps), the prison outreach community where he taught computer and math until it became unsafe for him to do so, any political community involved in expanding the privilege we have enjoyed to others…..I have been overwhelmed with literally hundreds of messages from so many of you, people who knew Greg in some capacity, and who recognized him as the person of integrity that he was.  He did not just talk the talk; he walked the walk.  It is incredibly gratifying to hear from you all, little vignettes or stories about him and how he impacted you.  He truly leaves a great legacy of, as I said earlier, good works and good will. 

We will have a true Celebration of Life at the First Parish Church in Stow when conditions permit.  Meanwhile, we had a family gathering on Cow Island in which we exchanged stories, then broke into one of Greg’s favorite activities – a big, inter-generational soccer game – a fitting way to honor him. 

Thank you all for your attention to the blog.  Greg’s memorial page, including many pictures,  may be viewed on the website www.fowlerkennedyfuneralhome.com

One note I received included these words by Chaim Potok, which the sender felt applied to Greg: “A span of life is nothing, but the man who lives that span, he is something.  He can fill that tiny span with meaning, so its quality is immeasurable though its quantity may be insignificant.  A man must fill his life with meaning.  Meaning is not automatically given to life.”  Greg gave great meaning to his life.  May we all do the same in his honor.

Barbara

 

Greg’s Blog – July 28, 2020

 Greetings to all who follow Greg’s blog, in which he recounts the many travails dealing with Multiple Myeloma, first diagnosed in 2012.  I (Barbara) am writing this update, which he will proofread and edit, a reversal of our usual roles, but at the moment, he does not have the energy to sum up what has happened since the last blog, posted 5/19.

 We did make it to our Cow Island cabin in Lake Winnipesaukee over Memorial Day, accompanied by our son Brian and two of his three boys.  It was a major challenge for Greg to negotiate the rough path up to the cabin using his versatile rollator, but he accomplished it. Even though his movements were pretty restricted, it was still wonderful to be able to spend time together in that special place.

 Back home in the early hours of May 31, he experienced difficulty breathing.  The bedside oximeter gave a blood oxygen reading of 70, dangerously low and thereby threatening damage to vital organs.  The local ER stabilized him before concluding that his was a “complicated case” and shipped him off to the ER at Boston’s Beth Israel hospital, where he has been receiving treatment.  By this time, the mouth sores he referenced back in the May 19 blog had become worse, severely impacting his ability to eat.  Nonetheless, they discharged him after 5 days and we gave having him at home a shot.  But he just could not take in food, and I feared he would perish from anorexia (a term a doctor subsequently used as well.)  After three days at home, the visiting nurse agreed that the mouth/tongue sores alone merited a trip to the hospital, and he was readmitted. 

 By this time, his “constellation” of issues included these horrible and painful sores, constant diarrhea, periodic cardiac arrhythmias, inability to breath deeply, night fevers and sweats, continued weight loss, fatigue, painful swelling of the feet….you name it, it was visited upon Greg in Biblical fashion.  They have continued their search for the source of infection that might be causing each symptom, not knowing if they were separate issues or related. 

 Even now, they still do not know what is at the bottom of everything, though they continue to search, test and treat, infuse, etc, etc.  Several weeks ago they tried another discharge, but it only lasted a day-and-a-half before he spiked a dangerous fever in the middle of the night, and we made another trip to the ER.  He has remained on the familiar hema-oncology floor (Feldberg 7) ever since, where the wonderful staff of doctors, nurses and other caregivers know him well and are familiar with his incredible will and desire to persevere. He sleeps a lot, but when not fevered or fatigued by a treatment, he is sharp as ever.  Diversion becomes an issue, and many hours are spent playing FaceTime games with various grandkids, and bridge via the Trickster app with other members of the family.  Multiple Myeloma, even in this advanced stage, has not diminished his uncanny ability to come out the winner at most of these encounters.

Here are the latest numbers:

The latest number is just a direct continuation of the previous 2.

The doctors now emphasize that there is a difference between the literature describing the efficacy of a particular drug, and an individual patient’s experience with it.  As we well know, all drug trials have criteria the patient must meet in order to participate.  They are looking for good data, so the participants tend to be younger, healthier, those who have not received as many different treatments as Greg has, or those whose disease has not progressed as far as his has.  Therefore when the literature says, for example, that 30-50% of the people on the trial have some sort of response that lasted for 4-6 months before remission, they predict that Greg may not get as much benefit as described.  Also, his Multiple Myeloma is aggressive and smart; with each subsequent treatment, it gets smarter and therefore figures out a way around the new treatment in a shorter amount of time.  Every treatment of course carries with it potential side effects.  Presently he may be a candidate for two remaining treatment options – one can have serious heart consequences, and the other produces cornea clouding in over 80% of those who receive it.  And he may not be healthy enough to receive them safely.  The appropriate path forward should be determined soon, but we have been in this limbo for a while now, as his various conditions juggle themselves around, requiring varying amounts of intervention to keep on track.

 We were looking forward to a discharge home, where we now have oxygen generation units on both floors, our stair chair, and other accommodations.  But the past two attempts have been foiled by the continuation of fevers, which may in fact be the result of the Myeloma itself, and not caused by some elusive infection.

 Greg remains committed to voting in November, and to participating as long as he can in the affordable housing projects in Stow (via zoom) that he has championed for so many years.  We hope he can stabilize sufficiently, and that we find adequate help, that he can return home safely without a boomerang trip back to the hospital.  Fingers crossed.

 To have all this happening against the background of a pandemic, the dismantling of our country before our eyes, the disruption of the economy, the interruption of all assumptions….make it feel like a cosmic assault on the world we knew, on all fronts.

 We remain very grateful for the support of our friends and especially our sons and their wives.  To see them and their children enjoy the camp on Cow Island is truly wonderful and feels like a legacy that reflects both of our values, as well as many years of our life together. 

I’ll conclude with a couple of pictures from our last visit up there.

Emma. Tyler, & Gabriel with sun glasses.

Geezers.

Sunset.

The Jamaica Plain family.

The Vermont family.

Barbara and Greg

Bad News

Well my Free Lambda has achieved a new record: 8171, a 28% increase over the prior record of 6399.  The current record reading follows two treatment-free weeks, as the current schedule involves three weeks of treatment, followed by a week off to allow my body to recover from the accumulated effects of the treatments.  At the end of my “time off”, I was feeling better, as I always am pretty beat up by the conclusion of the three weeks of treatment.  But apparently the disease managed to go on the offensive as well.

Barbie notes that the highpoints of the graph form a remarkably straight line, moving diagonally upwards in a predictable trajectory.  One hopes that as the dosage of Carfilzomib increases with every round, perhaps the current treatment can eventually get things under control, though the graph does not suggest that it necessarily will do so.

Now that I know the latest number, I can attribute various symptoms to it.  On the mornings that I take Revlimid pills (every other day), I must inject myself with the blood thinner Lovenox.  Sunday’s tiny injection site in my tummy bled during the day, and through the night, in spite of applying bandages and gauze pads.  Could this be related to the altered state of my blood?

Another symptom that may be attributable to the activity of the disease is mouth sores that refuse to heal.  {I accidentally bit my cheek and lips while chewing on something.  Not unusual, and they normally heal in a day or so. } These have persisted, and they hurt.  I am not much interested in eating, and these sores make me less so.  In general, I am a shadow of my former self.  My football weight was 195, and my running weight was 185.  Now I range between 145 & 150.  For some odd reason, I eat much more slowly than I used to.  I actually chew things I used to just inhale.  I rarely finish a full plate of food, and even Barbie eats faster than I do.  She is trying to load my diet up with calories to avoid further weight loss, just the opposite of what she does with her own diet.  I am managing to consume an Orgain shake in the afternoons, endeavoring to eat more frequently.

But there are ways that I am better than when I posted the last blog update.  The severe pain in the muscles on the surface of my ribs is gone.  Thank heaven.  The medical team never had an explanation for that pain, but it is certainly great that it is gone.  For months I was dependent upon the stair chair to get between our first and second floors.  But recently I have taken to walking up and down the stairs from the kitchen to my office area.  It is surprising how much exercise doing stairs generates!  I get winded, especially going up the stairs.  But these stairs have a good handrail that I clutch onto so that I am confident that I won’t fall.  I do recall getting winded running up 13 flights of stairs in the Paine Whitney Gym at Yale to keep in shape during the winter.  Somehow, that was different!

My legs have gotten better as well.  They used to warn me not to put weight on them.  That fragile feeling is now gone, but it hasn’t resulted in an ability to walk faster.  It is now time to plant a garden; I try to spend an hour or so every day on all fours, pruning, pulling weeds, or putting out mulch in the garden.  My role is to keep the permanent plantings (raspberries, blackberries, asparagus, grapes) under control.  The effort feels good, and I generally manage not to overdo it. 

I was not able to plant a garden last year because I broke my hip on May 3^rd.  This year, I am just not mobile or strong enough to consider planting, either.  But late in the winter a young fellow named Patrick asked if he could garden part of our property.  Part of a long-time Stow family, he works at a place in neighboring Bolton that features exotic animals which he intends to feed with produce from his garden.  It was great to have our perfect set up taken over by a young, able-bodied enthusiast!  He has greatly expanded the original garden, claiming part of the horse pasture, using a tractor and harrow borrowed from the neighboring orchard.  He will need to keep the critters at bay, but that is his problem.  It is great to see the land being productive again.  As he puts it, the produce will feed the “rodents and reptiles.”

The solution for the new high Free Lambda reading may be a clinical trial that is being run out of the Dana Farber Cancer Institute.  Unfortunately, when the coronavirus pandemic hit, they shut down all clinical trials.  They are currently in discussions about when and how to open new trials, so when I go in for my treatment on Friday, perhaps I will learn if a new option for me exists.  If a patient doesn’t qualify for a trial, they sometimes allow the treatment to go ahead, on a “compassionate basis”.  Needless to say, I am quite interested in the results of their current discussions.

So, I have felt worse, but I am scared by the new number.  Scared enough to ask if the new Free Lambda reading threatens harm to organs such as liver or kidneys that process blood.  No answer yet.

More of the Same

I feel remiss in that it is more than 2 months since my last blog post.  I’ve been waiting for good news to post, but it just hasn’t happened.  The current treatment has prevented my Multiple Myeloma from racing away, but it hasn’t brought the numbers down either.  Here is the latest graph, as of last Friday:

The latest Free Lambda reading is 4385, which up until last October would have been a new high.  There is some suspicion that the last 2 readings may be inaccurate, as tests for other patients have come back unexpectedly high.  But my bones feel as if the disease is rampant, so I am not holding out much hope that the numbers are wrong.  The orange line at the bottom right of the graph is intended to track the current treatment plan (Carfilzomib, Revlimid, & Dexamethasone with Daratumumab as an enhancer).  The dip to the right is an attempt to show that in the third round of treatment the Carfilzomib infusion is skipped in week 2.  It will resume in week 3.

Actually, my body feels like there are 3 completely different things wrong with it.  In fact, while I was taking significant pain killers, it felt like there were 4 different things wrong, as I had a wicked itchy back as a result of the pain killers.  Luckily, cutting back to just Tylenol has removed that problem, so I can now sit without squirming or continually scratching.

The 3 things are really quite different.  First, my chest, ribs, and upper back have significant bone pain.  My upper back is quite bent forward as a result of compression fractures of upper vertebrae, and if I stay vertical for prolonged periods of time (such as composing documents on my computer), my back really hurts.  Plus I have a break in my sternum, so a doctor just this afternoon said a brace to support my upper back would not work and would be painful.  Since you move your ribs and chest all the time when you breathe, there is no respite from the pain.

Second, when I do things with my arms lifted away from my body or when I lift things (like the walker over obstacles), I get shooting pains on the surface of my flanks.  Not in my ribs, but in the muscles just around the ribs.  Nobody has explained why these pains are happening, but they sure are.  They always ask you where your pain registers on a scale of 1 – 10.  I generally have said things were in the lower range.  But these shooting pains, especially as a result of a sneeze, can be right up there, 8 or 9.  I am motivated to figure out what evokes these pains, and I do my darndest to avoid those activities.

Third, my legs object when I put weight on them.  They don’t hurt per se.  They just feel like the joints are getting compressed when I walk or stand up from a sitting position.  They are telling me, “Don’t do that!”  So sometimes I sit poised to stand up, and it takes real willpower to get in gear.  For a while I was describing the feeling as the legs felt fragile.  And that made sense, as especially the ulna in my left leg was quite washed out in an x-ray of my leg.  I’ve had radiation for my left hip and upper leg that worked well.  I’ve had lesser radiation of my lower left leg, but there has been no corresponding feeling of improvement.  But what impresses me is how different the feeling in my legs is from the feeling in my chest and back.  Not a hurt per se, but a warning signal.  I do try to get out for a walk each day, but am I ever slow.  I get to our neighbor’s driveway and turn around.  The doctors tell me just getting out there and walking is the key thing, but I sure do miss the times when I was able to go for a run every morning.

That’s more about my symptoms than you ever would want to know.  We are keeping at home as much as possible.  Barbie does all our shopping and errands, as I am immune-compromised.  She has begun teaching piano lessons using facetime and her laptop, and while it is not ideal, it does keep the students engaged.  Plus it puts more responsibility on the students, which is a good thing.  And while she is at it, she gets to see what their instrument setup is at home.  Frequently she has made suggestions for improvements.  She devotes her Fridays to driving me into Beth Israel for my treatments.  While I am getting infused, she goes for walks around the Longwood area, and it is amazing how many other people she observes out getting fresh air while keeping their social distance.  We keep in touch with family and friends via Zoom and Facetime, but we do miss having the kids on our laps when reading them a story.  About the best we can do is to challenge the 7 year-olds to games of Connect-4 via the phone. 

New Treatment

Evolution is pretty clever.  While a certain treatment for multiple myeloma may be effective for a while, eventually the disease figures a way around it.  Basically, the law of large numbers works against you.  A single drop of blood contains 10 million blood cells.  So, when a treatment kills 99.9999% of the bad guys, it still leaves .0001% that it did not kill.  That is 1,000 in a drop of blood.  Science.answers.com says there are 120,000 drops of blood in the human body.  So that means that 120 million of the bad guys survive the treatment.   And those proliferate to become the new normal, and at that point the treatment no longer works.  I believe I recently reached that stage.  Here is my latest graph of Free Lambda:

The latest spike (6399) was the day Dr Liegel decided to move me to a new treatment regimen.  The next reading (3673) was the very next day.  That indicates more the variability of the measurement than the effectiveness of the new treatment.  The new treatment is called enhanced KRD, which stands for Carfilzomib, Revlimid, & Dexamethasone with Daratumumab as the enhancer.  Yes, Carfilzomib begins with C, not K, but maybe the acronym reflects the fact that it is pronounced with a hard C.  In fact, the first treatment did not include Revlimid, as I had not yet received the drug, which you get through UPS package delivery.  Plus my platelet count was too low to allow me to go back on Lovenox, which is a blood clot preventer.  One possible side effect of Revlimid is pulmonary embolisms.  I have had 2 such embolisms, so I need to be on Lovenox when taking Revlimid, much though I hate injecting it into my tummy every morning.

The net result is a significant increase in the effects of the disease.  The prior post featured an x-ray of my left lower leg, showing the weakness of my fibula.  That has spread to the right lower leg as well, so I am walking with a double-sided limp.  Plus right about the time the new treatment started, I tested positive for Flu.  Presumably as a result of exposure to people over the holidays, in spite of the fact that nobody else in the family had the flu.  They put me on antibiotics, but I still did a lot of coughing.  In fact, my lungs gurgled as I breathed.  All that would have been OK, except for the fact that when I coughed, it really hurt.  I believe I ended up cracking a couple of ribs from the coughing, and there is residual pain in my back from the exertions.  Then a week later a chest x-ray indicated I had pneumonia in one of my lungs, so there was another treatment for that.  As of the latest treatment (1/21) the lung congestion is gone, and there is only minimal coughing.  But the level of bone pain in my back, my left shoulder, and my ribs is still significant.  They have had me double the dose of pain killers, and I really notice when the pain killers wear off.

The net result is that I am moving much more slowly and weakly.  Stairs are out of the question and Barbie is driving me to all my appointments.  I get around the house with walkers (one upstairs and one downstairs).  I navigate between the floors with the stair chair, which once again is coming in very handy.  A major issue is the passage between the upstairs corridor and my office.  We added a second stairway when we renovated the house in 1994-95.  There really was not room for a stairway that would adhere to the codes for steepness.  The solution was to split the stairway at the top, creating a landing and 2 steps up to either side. 

The net result is that you have to climb down 2 steps, across a landing with an indented side, and then climb up 2 stairs.  This is a challenge with a cane, especially if your legs feel so shaky that they might give way at any time.  Barbie set out to solve this problem.  After assessing the situation and making a few calls, Marcia Rising suggested that a local fellow, J T Toole, dealt with mobility problems for seniors in town.  He came over right away and suggested adding 2 grab bars on the doorway to the attic, which is at the end of the stairs.  He also suggested adding a fold-out handle to the back of the bookshelf on the corridor side of the stairway, but that needed to be ordered and is expected in later this week.  But for now the 2 handles are making negotiating the stairs much more reliable. 

I can grab onto the handles while descending or ascending the stairs from the landing, and I no longer feel in danger of losing my balance and falling down the larger stairway.  A major relief.  Thank you Barbie, Marcia, and J T.

Meanwhile, we had plans to spend 1/18 – 1/25 in Cancun.  Barbie made these plans in conjunction with my sister Margo early in January, before things turned bad for me.  We set up plans to get a treatment just before leaving and then immediately upon return.  Barbie’s sister Dowie recommended a particular resort where she had attended a wedding.  She had gotten her husband Bob there in a wheelchair.  But the onset of the flu and the spike in the free lambda happened less than a week ahead of the planned trip, and we called in the trip insurance with great reluctance.  Margo and Philip went on the trip anyway, and they report that it is warm, gorgeous, and luxurious.  Being in a resort surrounded by those in less fortunate circumstances does make them feel guilty, but they have found nearby ruins fascinating, especially Margo, who is an architect. Our absence as the opposition takes card games such as bridge out of the equation, but they report having a very nice time.  I am not sad we cancelled, as a long plane ride and the ground connections are not something my body needs at this time.  Brian speculated that cancelling the trip would result in a sudden rally on my part, and although the flu and pneumonia are gone, the basic immobility remains.  Maybe some other time.

As always, we are extremely grateful for all the support and good wishes of our friends and family.  Treatments are frequent and long; the drive to Boston just far enough to make it significant, especially if one has to travel during morning or evening rush hours.  Having friends help with transport is especially appreciated.  We hope that the new treatment will kick in soon, reducing the effects of the myeloma on these weary bones.

New Developments

Suddenly it has been 2 ½ months since my last blog post.  In part that was because I didn’t have a clear story to tell.  My free lambda numbers have been bouncing around without a consistent direction.  Here’s the latest:

Yes, they are gradually coming down, but not infrequently they go up.  And if I had any of the recent numbers back in the spring, they would have been close to new records.

I complained that my left leg had stopped healing, and it felt weak.  So, they decided to give me radiation in the left hip and femur.  After initial prep where they put tattoo spots on the target areas so they can aim the radiation accurately, the treatments were quick (10-12 minutes) and uneventful.  That is to say there were no immediate aftereffects.  Even after 10 days of treatments there were no negative effects.  X-rays of the hip and femur still show spots where the bone has been sculpted away, but none of it is concerning to the doctors.  The x-ray sessions occurred November 7 – 20, which may account for some of the reduction in the free lambda readings during that time.

Perhaps of more concern is the fact that my lower left leg has developed a feeling of fragility.  It doesn’t exactly hurt, but it sure tells me not to push off with my calf muscle.  The net result is that I hobble along, limping with my left leg and pushing with my right leg.  I have been taking weekly physical therapy sessions (and actually doing the exercises in between – mostly), so the leg is not weak.  But it sure feels as if I would do harm to myself if I did any drastic motion with that part of my leg.  Within the last 10 days or so I have started to feel the same fragility in my right lower leg.

I happened to have follow-up appointments with both the surgeon who repaired my hip back in May and the doctor who oversees the radiation treatments.  The radiation doctor volunteered to radiate the lower leg, and the surgeon offered a metal pin as a potential solution if the bone were in danger of breaking.  Each sees the situation through his or her own lens.

In the process they did x-rays of the lower leg.  Here is an x-ray of a normal lower leg.  One you can find using Google:

The big bone to the left is the Tibia, which carries most of your weight.  The smaller bone to the right is the fibula, which helps with balance and maneuvering.  Note the contrast between the bone and the surrounding flesh.  The calcium in the bone makes it stand out as white, especially on the outer edges.

In contrast, here is an x-ray of my lower left leg:

The tibia looks pretty robust.  The fibula does not.  The part that is 2/3rds – 3/4ths of the way up the bone has very little contrast with the surrounding flesh.  The surgeon says that is the result of the multiple myeloma causing the component in the blood that absorbs calcium from the bones to have an upper hand over the component that deposits calcium in the bones.  The net result is that I am probably feeling fragile around there because the bone is weak. 

I had a PET scan today taking images of all my bones.  On Monday I will have a session with my oncologist to determine what the course of treatment will be. 

Since the start of December, I have a new oncologist.  My former oncologist, Dr. Nahas, has moved to California to take a job with a biotech company doing research on CAR-T cell therapies.  My new oncologist, Dr. Liegel, is quite young (and pretty).  I have been assured that she is good and that the entire medical team reviews all patients weekly, so she won’t be totally out there on her own.

Meanwhile over the holidays I was extensively exposed to grandchildren, which means I was exposed to multiple germs. I was hopeful that I would get through the exposure without any consequence, but since they have all gone home, I have come down with a pretty bad cold.  Coughing hard or sneezing really causes problems.  It feels as if I have done damage to one of my right ribs, so finding a comfortable position to sleep in is difficult.  The pet scan should show what is going on, and the treatment plan will make everything all better.  I wish.