Blue Collar Cancer

Tom, Mary, Jim, & me—The puppy's name is Skipper.

Recently, I visited family in San Francisco, my hometown. My roots are urban, but 40 years ago, my wings carried me to more rural environs. I was born at Children’s Hospital on California Street in 1946. My parents worked hard providing their five kids with the basics: bikes, baseball mitts, and a safe home.

I have three brothers and one sister. All of us siblings pursued middle-class careers: fireman, utility worker, airline employee, librarian, and postmaster. We inherited our blue-collar work ethic from Mom and Dad. My father was a body and fender man at an automotive dealership. My mother worked decades as a nurse, often choosing swing or graveyard shifts in order that we kids would have at least one parent home for meals.

Sutro Forest is behind these homes

My last sojourn to the city occurred in May of 2010 when my son graduated from the Berkeley School of Law. Prior to that, I visited in June of 2008 just before embarking on my stem cell transplant for multiple myeloma at the Seattle Cancer Care Alliance. My sister precipitated this year’s mini-reunion. She works for the Milwaukee Public Library in Wisconsin and chose to vacation in San Francisco.

I am the youngest of the boys. My brothers all live in California. My sister and I live out of state. On my periodic visits, the family always convenes at my brother Tom’s house. He and his wife live atop Stanyan Street on the slope of Sutro Forest. This is one of the few places in the city where you receive nightly visits from raccoons, opossums, and a revolving door of homeless cats.

Looking north down Stanyan Street

Their dining room on the third floor provides an expansive view of neighborhoods stretching northeast toward the bay. On many afternoons, fog creeps forward. It mutes the city’s hubbub and spikes the air with a blend of the ocean’s salt smell and the pungent aroma of eucalyptus from the adjacent forest. An opaque shroud covers the houses below, hiding intersections clotted with traffic.

In spite of my origins, I’m something of a country bumpkin when revisiting the city. What I used to take for granted now awes me. How, I wonder, does its frenetic energy coalesce into order? The infrastructure of a big city is a miraculous creation. An interdependent web of systems designed to accomplish specific goals exists as a backdrop to hundreds of thousands of individuals. Utility workers maintain the complicated networks that power daily tasks; crews devoted solely to handling the city’s waste products keep the streets clean and sanitary. I could go on, but the  point is that the whole is greater than the sum of its parts.

In the neighborhood

In a way, our body mimics the activities of a metropolis. Our respiratory and circulatory systems, for example, just go about their business, independent of any input from us. Our blood flows; we breathe in and out. Another example, apropos to my situation, is the immune system. It is comparable to a police force. When lawlessness, in the form of an invasive intruder, threatens to undermine our health, a SWAT Team of antibodies races to the rescue. In the case of multiple myeloma, which is a cancer of the immune system, the police, unfortunately, are corrupt.

The Golden Gate in the afternoon

Siddartha Mukherjee, in his Pulitzer Prize winning book, The Emperor of All Maladies, theorizes about this corruption. He alleges that the gene for cancer is inherent in our DNA. Genes are programmed to mutate; it’s an evolutionary imperative. Normally, our body discards unproductive mutations. However, as we age, the more stubborn mutations withstand our immune system’s defenses. Many cancers, certainly multiple myeloma, are age related. MM is generally a disease of older people whose immune systems are wearing down. Mutations also occur in response to toxic stimuli in the environment. Perhaps this explains the seemingly increasing incidence of MM in younger people.

Soon after returning to Oregon, my monthly blood work revealed a small up tick in the numbers specific to multiple myeloma. Dr. M and I decided to add a low dose of steroids to my maintenance chemo. MM does not herald its coming. Like the fog in San Francisco, it slips in quietly. One moment the blood work is clear then, suddenly, things are murky. I’m ok with this little tweak in treatment. I lean toward the theory that these drugs work better in combination than alone. Furthermore, my numbers remain quite low and I feel good.

Dex Reflections

Reaching for Seashell,A suntanned person reaches for a seashell washed up from the Indian ocean stranded on the beach in the maldives photo

DEX REFLECTIONS  
by Kris Kelly 8/25/10
I sit in the warm grainy sand.
Back and forth I massage my tingly toes and feet in the warmth of the grains.
Messaging my mind with myeloma thoughts.
Always there when my world is quiet.
The hot sun warms my cold bones,
my chemo curls.
The hot sun melts into my parched skin
dried from drugs, and side effects.
I don’t recognize parts of this body anymore.
Portraits from my past are just faint ripples
of my reflection in the water now.
My youthful appearance changes as the effects
of dex puff and fluff shaking my nerves, my hands, my patience.
The dex waves this week seem stronger.
The foaming swirls swoosh up to my ankles.
lapping at my soul.
threatening to overcome my positive thoughts
my marching-forward-attitude, my sunshine.
I breathe deep, sleep more, try to protect my children from my pain.
I’m hiding my slacking energy behind the strong shoulders of my beloved.
I breathe, I wait, I pray, and then…
The draining dex waves slink back into the sea
and once again I can see the hidden gifts left behind
in the wet, cool, sand.
The shiny twisted shells of miracles.
Each one a unique blessing.
The life I have been given, the smooth, peaceful thoughts of family, love, God.
The tender mercies of my Saviour glistening  among the grains. 
and I arise stiffly, slowly and walk back to my world preparing for another round.



I was diagnosed with Multiple Myeloma October 2008.  Dexamethasone was the first medication I was prescribed.  I have been on this steroid continuously since then.   Two weeks ago I finished up my last round of Dex.  I go in for blood tests, a PET scan and a biopsy next week and then meet with my Oncologist at Huntsman a few days later.   Assuming that my “numbers” are all good, I will be done with maintenance treatment!   

I was feeling pretty poetic and somewhat dramatic as I wrote this poem a year ago.  I just wanted to get down on paper what I felt on my “dex days.”  

A BEaUtifUL MeSs

Family Easter Egg Hunt.
That cute little bunny is my grand daughter.

How can I explain all that has gone on in the past several months?  Life just seems to roll along and sometimes I can roll along with it and keep up with the daily normalcy of life.  Other times I have been the rock that silently lies still and immovable as life swirls too swiftly for me to catch up.
So How am I doing?
I am trying to make it through the last three months of maintenance therapy.  It seems to be getting harder.  I have been on 20 mg of Dexamethasone every three weeks.  I take it on days 1-4.  I used to get a little energy on those days but thats seems to be dwindling.  
From about day 5 to to 14 I get severe fatigue, achy muscles, and pain.  I slowly work my way back up and feel pretty good for a few days and then start all over again on day 21.  If all tests are good I should be off of any treatment by September.  If I can hold out that long.  It is SO tempting to just call it quits!  I have too many things to do, projects to accomplish, and people to do it with to spend half my life laying down!  
So that’s the latest report on “How I’m doing.”  I’m just telling it like it is.  

As for the home front it has been filled with great things as well as crisis.  I am writing about these things not to brag but explain how great, as well as crazy my life has been lately.
Trevor and Mallory. UVU graduation April 2011
Mallory our only daughter graduated from Utah Valley University in April.  She received a Bachelors degree in Behavioral Science.  We are so proud of her!  She has worked so hard to get through school quickly and can hopefully Trevor can do the same.

 Our son Jace has been out in the mission field for about ten weeks.  He Loves Puerto Rico and the people there.  Every week we wait anxiously for his next email.  Right now he is in Ponce.  He rides a bike along with another missionary-called his companion.  The companion instructed Jace on the fine art of catching lizards.  So as they are traveling along on their bikes they will catch a few and put them on their backpacks where they stay until taken off.  He has met many nice people and certainly stands out in a crowd.  He said several grandmothers tell him he has beautiful blues eyes.  
    It is so fun to share in his adventure.  If you would like to read parts of the letters he sends home you can go here.
Our two sons at home are keeping life rolling along, as I said before sometimes I can keep up and sometimes life just swirls around me.  Thankfully my husband pulls up the slack and spends a lot of needed time with them.
Last month, my son Trent completed his eagle project,  which took much planning and preparation.  He and several friends painted several buildings at a campground.  The total project took over 100 service hours to complete.  Trent demonstrated leadership and organizational skills to complete it.
   Our church has a very strong scouting program for boys and we really feel like it helps build Young men.  In a couple weeks their troop will go camping and river rafting. 
  Oh also this past month Spencer tested for his black belt.  He has worked really hard and for years to accomplish this goal.  It was more challenging to him then his older brothers,  We are so proud of him for sticking with it.  Now all my family have earned their black belts.  
Joe, Tyler, and Spencer after getting his blackbelt.
(whew stay with me here I’m not done yet.)  
So life has been just rolling along until Thursday May 26.  That evening I really  understood what it felt like to come so close to losing my husband.  As far as we can figure he choked on something and passed out.  When Trent and I found him he was turning blue with sporadic breathing.  I had Trent call an ambulance while I called my neighbor who is a Nurse Practitioner.  I was a basket case- (I guess becoming an EMT is out of the question for me.) Luckily his heart kept beating and he was getting some oxygen.  He was taken to the hospital and ended up spending three days there.  He had aspirated into his lungs so he was kept sedated and incubated for 24 hrs while they cleaned out his lungs and ran every imaginable test.  Nothing was conclusive.  The best possible medical reason this happened was that he just choked on something.  Thank goodness the other possibilities  were extremely serious.  Non-the-less this incident completely humbled us.  

    My body was already worn down from “dex week” and then with this added crisis, I ended up with an ugly case of pneumonia.  I’m sure you can imagine the chaos at our home this past week as he was recovering and I was getting sicker.  I am so eternally  grateful for strong family and neighbor support. 
Me at Huntsman Cancer Institute where I was treated
 March 2011
I have basically written the facts or events of the last few months, however the feelings and emotions are somewhat overwhelming.  It has been hard! and brings plenty of fresh prospective on what really matters.  I thought I pretty well had that covered with getting cancer but apparently the Lord has much more for us to learn.   It is absolutely a “Beautiful Mess” right now but as the song says, “here we are.”  I am still here and my husband is still here and we and our family are in this for the long haul.  But I do thinks its time for a vacation!

Rev-lite trial: end of cycle 5.

I was at daystay on Tuesday for my monthly Rev-lite trial consultation and Aredia.
All is well, all is stable, and test results remain in the normal zone, an uneventful medical month.
Cholesterol has returned to normal as well thanks to the diabetic diet.
The glucose reading is excellent considering what it was at diabetes diagnose. Thanks to the diet my fasting HbA1c % = 6.6
Perhaps I can now loosen up a bit and have some occasional treats.
I did have a pie on Fathers day, the local Green Bay Bakery award winning chicken and vegetable pie. I sniffed it, slowly ate it and made it last.
That ends cycle 5, now onto cycle 6.
I am now on my steroid dexamethasone 4 days a cycle which has made a big difference to quality of life. That’s 23 days without it. Sleep has returned to normal except for those 4 days, the real Sid has returned. That doesn’t stop me from talking to drivers who take the space between me and the next car or telling the footy referees of their mistakes.
Myeloma for me now is a series of treatment, remission, relapse etc though I hope the latest treatment is an extended remission. We use the theory when in remission do it now rather than later.
Therefore we are having a holiday in November, a 10 day coach tour of the bottom half of the South Island. We have previously seen the top half now we take in the remainder. Being a coach tour I can sit back to be taken every where and look out the window at the scenic wonders. We intend to take a scenic flight over the Southern Alps, Mt Cook and the glaciers as a big memory.
I am returning to work at Beca part time on the 20th, 3 days a week, 4 hours a day. There I am looking forward to the people contact and more brain involvement. More time depends on how I cope and work load availability, no worries about that.

Rev-lite trial: end of cycle 4.

Tuesday 17th August 2010 I completed my Rev-lite clinical trial cycle 4 (28 days) for myeloma. Trial protocol states that after 4 cycles the status of my disease will be reassessed. If my disease has become worse the trial will stop. If my disease has shown improvement I remain on the trial.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can’t say, that’s the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.

Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.

Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8

Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.

Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.

Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.

Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.

General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.

Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite clinical trial: end of cycle 3.

Rev-lite trial: end of cycle 3.

Tuesday 20th July 2010 I completed my Rev-lite clinical trial cycle (28 days) for myeloma.
Test results:
The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the “normal” range as expected. It is noted that Anaemia is present.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.

Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.

Who let the dexo dogs out?

Who let the dexo dogs out; they mauled me and left me with diabetes.
My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.
We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.
Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.
Candida appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.
My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.
When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.
I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.
There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.

Links (open in new page):
Oral Candina
Clinical trial

Dex and Dope

Highly intelligent people often display a huge gift: the ability to rapidly and distantly free associate, connecting ideas to areas that are so far away that most people can’t see the connections unless they are patiently taught. There are other aspects to intelligence, of course, but the ability to free associate over vast mental distances is one of the most obvious to the sensitive onlooker.

Plasmaphoresis

In March of 2007 I was at my monthly oncologist appt for routine labs. I had previously had creatinine levels in the 0.8-1.0 range. Looking back in my records my creatinine on January 2, 2007 was 0.9. January 30th it was 1.0. February 27th it was 1.5. March 30th it jumped to 4.0. At this last level my doctor advised me he was going to admit me to the hospital.

At this time I had been on Biaxin, Revlimid and Dexamethasone for three months with not a very dramatic response. I had also received Zometa recently and had been on Ibuprofen. While in the hospital I was diagnosed with Acute Renal Failure (ARF). I was put on i.v. fluids and my chemotherapy was changed to Velcade. I also had a kidney biopsy performed which revealed I had “myeloma kidney”. My doctors call was to have me receive plasmapheresis treatments.

I first had to have a catheter inserted near my collar bone. The catheter had two lumens. One took the protein out and the other replaced it with albumin (I think Beth, I’m not 100% sure). I had five treatments, two as a hospital patient and the other three as an out-patient. It was an amazing experience. I was connected to this fairly large machine that had buttons, dials and lights along with the tubes that were connected to my catheter. The process took between 60-90 minutes. They can adjust the speed of the machine and it was necessary to do this a little at a time.

The process was painless. I do remember I was chilly during the transfer. They warmed the albumin before it was introduced to my system. They did tell me I might experience tingly sensations around my mouth but I never did.

During the process you could read, watch tv, listen to tapes or sleep. The nurse was there with me during the total procedure.

Each day I had treatment they took my labs and my creatinine continued to improve.
In September I did a SCT and my creatinine is now at 1.9.