Friday, May 16, 2014

New Hope . . .Bodaecia Rising

Since my last post in January, things have gone from bad to worse and it has been an extremely difficult time.  Many times, I tried to begin a post but I was overwhelmed by how I was feeling and the frightening fact that the drugs were failing me and my lambda light chain was going up at a precipitous rate. My warrior spirit had left me and I was beginning to feel defeated.

In my last post, I was on 200 mg of thalidomide along with dexamethasone.  I felt postively toxic and never felt well and at times, I felt like a toxic dump. To make matters worse, my lambda light chain kept going straight up along with the beta 2  microglobulin number. The thalidomide was having no effect on the myeloma and after one 28 day cycle and part of the next cycle, my doctor stopped that regimen.  My creatinine was creeping up and being watched carefully.  

My next plan included a 21 day cycle of 20 mgs of revlimid daily  along with dexamethsone.  I continued to feel toxic and the creatinine was still misbehaving.  I was ready for the week off after the 21 days, thinking I would start feeling better.  That was not to be.  Each day I felt worse and by the fourth day, I knew I needed to get into the doctor and soon.  I went the next morning and by afternoon I was in the hospital with acute renal failure.  They flooded me with fluids and transfused me and on the fourth day I was able to go home.  My doctor reduced the revlimid to a much lower dose: 10 mg every other day.  On April 22, I was hospitalized again because my calcium had become dangerously high and I was still in acute renal failure.  Again, I was flooded with fluids and transfused.  This was followed by:

- A kidney ultrasound which showed that my kidneys did not look damaged.

- A kidney biopsy that revealed that the myeloma was sending proteins to gather in the kidneys and that was causing the failure.

-A bone marrow biopsy which revealed that the myeloma burden in the bone has risen to about 70%.  This has caused my wbc and rbc to have taken quite a prolonged dive. My white count has hovered from .7 to about 1.6 for about three months.  However, yesterday, the wbc was 2.9!

- Next, my feelings of toxicity were validated because the toxins were unable to be processed out of my body and the residue was still in there swirling around. It was determined that kidney dialysis was in order, so I had surgery to place a hemodialysis catheter.

-Another phase of treatment was to begin plasma phoresis.  This process uses a centrifuge like is used to separate out platelets, stem cells. etc.  The goal of plasma phoresis is to remove the proteins from the kidneys that are impairing the kidney functions.

- While I was still in the hospital, I began dialysis and plasma phoresis.

- I was released after nine days, but have been going back to the hospital to continue dialysis and phoresis.

Last week my outpatient schedule looked like this:

Monday, 8:00 AM -  Four hours of dialysis 
Tuesday1:00 PM -  Two to three hours of plasma phoresis
Wednesday, 8:00 AM -  Four hours of dialysis and two units of blood
Thursday, 1:00 PM -  Two to three hours of plasma phoresis. (This  turned out to be a seven hour day....a long story.)
Friday, 8:00 AM -  Four hours of dialysis

I had seven plasma phoresis treatments and am finished with those.  But the dialysis continues on Monday, Wednesday and Friday.

In the meantime, my oncologist started dexamethasone again at 40mg each day for four days and then four days off and repeating that.

I have been feeling much better lately even if I am  being "propped up" by dexamethasone, dialysis, and transfusions. I even baked bread yesterday!   However, there have been some dark days especially when I was still  in the hospital. I felt like I was nearing the end and starting to think about things like not making it to my 45th anniversary in June, attending my  50th High School Reunion in the fall or finding out how the last season of Mad Men ends.  Of course, there were many other much more important worries and laments that were troubling my emotional state. It was the worst of times.

My oncologist was adament that I go back to Seattle Cancer Care Alliance (SCCA) which includes world renowned Fred Hutchinson Cancers Research Center. In 2010 I had my autologous stem cell transplant there.   I was able to get an appointment with Dr. Bill Bensinger who is their myeloma expert and guru.  He has been prominently featured a in number of Patient Power videos with Andrew Schorr.  That appointment was today and I feel like I have a new lease on life.

It was an encouraging and uplifting consultation as we reviewed my case and discussed possiblities.  His recommendation is a combination therapy with two new drugs, carfilzomib and pomalidomide along with dexamethasone.  He indicated that it has been an effective combination in a high number of cases and he was confident that it could help me. This may also allow my kidneys to improve their function if the myeloma is being beaten back.  No guarantees on this but I am hopeful.   He said this combination has the ability to get patients back into remission and if not remission, close enough that an autologous stem cell transplant  could be the next step. I still have 5 million stem cells in cold storage at SCCA and we can follow up the combination regimen with a transplant if necessary.

It was the best of times today.  We left Dr. Bensinger feeling there was hope again and that has been sorely lacking over the last few  months.  Today, I began  to feel my inner warrior emerging again.....she has been absent for months.  I think I'll call her Bodaecia after the Queen of the Iceni who led a revolt against the Romans in ancient England.  She was a fierce warrior and that is exactly what I need to be as I enter this next phase of fighting this insidious disease.


Friday, January 31, 2014

Best of Times. . .Worst of Times

Happy New Year friends. . .
May 2014 be the best of times for you!

It has been such a long time since I wrote my last post, "The Philosophy of Piglet and Pooh." In that post, Pooh exclaimed the sentiment that "today" is his favorite day. I have given a lot of thought about what to write in a new post since there haven't been many of my todays that I can call my favorite lately.  However, there were a few days that were my favorites and I will call those days the best of times.

The Best of Times

During December I got great pleasure from preparing for Christmas.  Decorating is something that I have always loved to do but since my diagnosis of multiple myeloma I haven't been able to do as much.  This year was different.  Even though I was often tired and not feeling great, I felt compelled to decorate. I even created a new vignette, "Bonfire"  that inspired me and put me in the Christmas spirit.  Now, my house was not decorated in the full regalia that I used to do, but it was much more than I have done since 2009.
Inspired by author and artist Susan Branch
In My Living Room

Christmas was special this year because my nephew Peter and Marisa's boyfriend, Dan spent the week with us.  We ate good food, played games, opened presents, celebrated and enjoyed all the cozy trappings of the holiday.  My energy level was pretty good and everyone pitched in and helped me as needed.  It was, indeed, the best of times.
Peter camping out by the Christmas Tree.

The Worst of Times 

I suppose "worst" is a little strong . . . maybe "not so good" would be more accurate.  I have been on velcade for nearly a year and it finally stopped working.  At  the end of November, my lambda light chain went up seven points.  It was a small increase but I don't like any increases. Three weeks later it had jumped up 42 more points.  This was quite upsetting, but my doctor reminded me that the total number was still fairly low.  Because it had gone up rather quickly it was apparent that velcade was no longer working. It was also causing side effects that were affecting my day to day life, so it was decided that I would start a new treatment plan.   

My next appointment was on December 31 and my new treatment was about to begin.  I am now back on  200 mg of thalidomide and 40 mg of dexamethasone on the first, ninth and seventeenth day of the cycle. Dizziness is a side effect of thalidomide and I have been experiencing that, but that has passed.  At times, the effects of this drug make me feel like I am radiating!  And then there is the dexamethasone. I have a couple of good days and then when it wears off.....Oh my!

I had bloodwork done on December 31 and received my lambda light chain results online on January 6.  My number had gone up another 118 points.  I expected it to go up because velcade hadn't been working since November and I hadn't started my new plan yet.  However, that number shocked me.  My number is still in the lower range but the trajectory has been straight up and it is frightening.  Will it stop going up?  Is this when the myeloma cells get the upper hand?  Will it become refractory?  I have so many questions and I am discouraged because I feel like I am back to square one in this battle.  

My most recent appointment was on  January 28.  I had the usual blood tests and the CBC numbers were pretty typical for me.  I won't see the light chain results until early next week. While I would be relieved to see the number go down, I have told myself I will be quite thrilled if it doesn't go up as much as it did last time. At this point, any positive change is a good thing.  The last two months have revolved around not feeling well most of the time and light chain numbers going up, so even the slightest improvement will make me happy.

The very worst of times was on January 7 when we had to say goodbye to our beautiful 18 year old tabby cat, Aislinn. She was an extraordinary cat who was tiny in stature but huge in personality. She was in charge at our house and everyone knew it.  When people came to visit, they would often ask, "Where is Aislinn?"  We always liked to say she had "star" quality.  She was a star in our lives and we will love her forever.
 In July of 2012 I wrote a post entitled, "Aislinn Striking a Pose."  Here is the link:

I am hopeful that I will soon begin to enjoy more "favorite" days. As my body gets more accustomed to the thalidomide, there should be more days of feeling better than just all right.  If the maximum dosage I am receiving starts beating the light chain numbers back towards the normal range, it will change my outlook completely.  I have been discouraged in the last two months, but I am beginning to emerge from that feeling and looking toward brighter days.  Just as the days are getting longer, my hopes are growing for the ultimate goal of achieving remission again.

Wednesday, October 30, 2013

Philosophy of Piglet and Pooh

 “What day is it?"

"It's today," squeaked Piglet.

"My favorite day," said Pooh.
~ A.A. Milne

Yesterday, I had my appointment with my oncologist and began the next cycle of chemotherapy.  The first thing on my mind to ask him was about the elevation of the lambda light chain on the last blood work.  He reminded me that what we really need to look at is both the kappa light chain number and the lambda light chain number and the ratio between the two.  My ratio had stayed the same and that was a good thing.  It would have been more alarming if there was a change in the ratio. So, for now, we are going to watch those numbers carefully and continue on with my chemo regimen.

One thing I love about my doctor is his great sense of humor.  I have always felt it was a bonus to have an excellent oncologist who also has a sense of humor.  I see him every three weeks and at each appointment, we laugh.  Maybe some cancer patients wouldn't like this, but I do.  Yesterday was no exception.  I asked him what we will do if the lambda light chain goes up and the ratio indicates a problem. His quick response was,  "I'll stop testing for it!"  In all seriousness, my doctor said that if that happens, we will probably change my chemotherapy plan. Brent and I laughed so hard  at his first response  and, as we know, laughter is good for the soul. 

"What does all this have to do with the charming words of Piglet and Pooh?" you might ask.  Well, to me this quote is one of the simplest and purest expressions of the idea that we should enjoy and cherish each day we are given.  When you have been told that the disease you have cannot be cured, it is a natural progression to spend a lot of time thinking and even philosophizing about life and death and I have had nearly four years to do just that.  Talking to my doctor and being reassured and laughing hard reminded me that each today can be my favorite day.  Even on a difficult day, when I  am not feeling well and find it challenging to control the anxiety that living with cancer can bring, it can be a favorite day. . . I am still here. 

Thursday, October 24, 2013

Hiatus and Halloween

It seems like I have been on hiatus since my last post was written over two months ago on August 15.  Since I began this blog, I have posted every month until now and I am not sure why it has taken me so long to write a new post.  Could it be writer's block?  Sometimes I think it is but maybe not. 

Over the last 5 1/2 months my multiple myeloma oddysey has been one of chemo twice a week for two weeks and then a week off.  I see my doctor and start all over again.  Nothing too interesting to report there, just the usual fatigue and what I call a toxic feeling that usually includes a headache.  On the days after chemo, the steroid drip that I am given before Velcade, gives me a boost and I can almost always count on feeling pretty well those days and often the next day after.  As you can see, nothing terribly interesting or exciting has been happening since I last wrote. Until last week.

To my great disappointment, my lambda light chain went up instead of down.  The time before it had gone down only four points and that was unsettling because it seemed to me it was an indicator that Velcade was losing its effectiveness against the myeloma cells.  So, when the number actually went up last time, it was upsetting.  Actually, it was scary.  I haven't talked to my oncologist about this latest result, but I will see him on October 29.  At my last appointment, I talked to him about the possibility that Velcade was losing its mo-jo but he said it is too early to tell.  He assured me we still have a lot of options including my 5 million stem cells in cold storage.  Since the initial shock of reading that elevated number in my online medical chart, I have calmed down a bit.  I know that there can be blips in blood work.  My WBC is a perfect example.  It is up and down like a proverbial yo-yo from one week to the next.  I hope that is the case with the lambda light chain since it is the main cancer marker that they track for me.

Three years ago, on October 19, I began the stem cell transplant process.  We drove back and forth to Seattle each day for  new rounds of screenings and tests.  This included full body x-rays, heart scans, breathing tests, blood work and more blood work, a dental exam, a mammogram, just to name a few.  It also included a couple of scares along the way: the surprising diagnosis of hypertrophic cardiomyopathy and the need for a breast biopsy.  To my relief, the biopsy turned out all right.  I had two emotional meltdowns during this time.  First, when I got the call that I needed a breast biopsy and second, the day they placed the Hickman line.  That Hickman line made the whole ordeal so real and the thought of those two lines hanging out of my chest for the next two months was more than I could take on that day.  But, I got through it.  On November 14, I checked into the University of Washington Medical Center and the real journey began with 24 hour round the clock chemotherapy that went on over five days. After that, we lived in Seattle for two months to be near the clinic as I continued the arduous process.  It is hard to believe it was three years ago.


I'm not afraid
There is no need.
He's but a grown up
Pumpkin seed.

In October of 2009 my home was in full Halloween regalia.  Oh, how I loved collecting Halloween things and decorating our home at the beginning of each October.  Sadly, all that Halloween fun has been boxed up and stored in the garage until now.  After I was diagnosed with multiple myeloma in January of 2010, I didn't feel up to the task of decorating and undecorating for Halloween for the last three years.  Even though I haven't been feeling great the past few months, for some reason I felt compelled to get those boxes out of storage this year.  My house is not in "full" regalia but I have put out some of my favorite things and it looks like Halloween in here again.  It has buoyed my spirits (no pun intended) and it has felt wonderful to get creative and be back doing what I love to do...decorate.


Halloween at Carole Leigh's House

Thursday, August 15, 2013

On the Summit


One cannot stay on the summit forever -
One has to come down again.

So why bother in the first place? Just this.
What is above knows what is below -
But what is below does not know what is above.

One climbs, one sees -
One descends and sees no longer
But one has seen!

There is an art of conducting one’s self in
The lower regions by the memory of
What one saw higher up.

When one can no longer see,
One does at least still know.

Poem from ‘Mount Analogue’
RenĂ© Daumal (1908–1944)

Rene Daumal was a French spiritual surrealist writer and poet who was born in Boulzicourt, Ardennes, France in 1908. One can assume that when this poem was written he was relating to life in general and I find the first line to be profoundly moving, "One cannot stay on the summit forever."  This is not a sad statement because this brief poem gives us hope and confidence that what we saw and experienced on the summit and can no longer see is always with us.  Furthermore, this poem gives me the sense that there are many trips to the summit and descents as we travel through life.

Yesterday at yoga class, the instructor read this poem during the resting phase of our workout. Instantly, it struck a chord with me and my recent experiences with relapse and treatment and it somewhat changed the direction I was planning to travel in this new post.  It even changed the title which I had tentatively decided would be Unpredictable

The past seven months have been, at best, unpredictable.  There have been so many trips to the summit and descents to the valley and most with no predictability.  I never really know when I will be feeling well and enjoying the view from the summit or when I will be too tired to do much of anything but nap.  Over these months, I have had some very good days and if I didn't know better, I would think I was back in remission and feeling well or maybe I could even imagine that I had never been sick in the first place.  Along with these wonderful days, there have been a fair number of days of illness (shingles, colds, coughs) and then there were the low blood counts that caused me to miss treatments.  These missed treatments and my trip to Washington DC, which caused a gap in the cycles, allowed the lambda light chain to reverse its downward trend and go back up.  Fortunately, it has only gone up about 20 points.  

In all this unpredictability, there is one positive constant:  Velcade doesn't make me feel nauseous or sick at all.  However, it often makes me incredibly tired and head-achy. I do know and understand that being tired is a lot easier to cope with than being nauseated and I am grateful for that.  Another positive note is I won't lose my hair.

Now how does this all tie in with the poem with which I began this post?  As I listened to our instructor read the poem, I realized that when I am at the summit, I am collecting knowledge and memories for those times when I have descended back down the mountain.  No matter how tired I may be or worried or frightened about my future, I can "have the memory of what I saw higher up" and I still know that I can climb there again and I will. . . many times.  I can see that with clarity now. 

Finding Peace and Contentment in My Own Backyard

This summer has been one of the best ever in Western Washington State.  We have had many summers in the past that never seemed to quite materialize into the lazy, warm days that we all love and enjoy.   Well, this summer has been one to remember with warm sun, little rain and many hours of daylight.  Because of this lovely weather, I have been outside more and our backyard has never looked better.  Now, I must confess, neither Brent nor I are crazy about gardening or yard work and if you were to look too closely, you would probably see more than a few weeds.  We have lived in this house for 39 years and the yard has evolved more by happenstance than planning and much of the "borrowed scenery" beyond our yard is wild, but I love the natural beauty and privacy it affords.  It has been a great source of peace and contentment to me more than ever before.  
Enjoying the Morning Sun

"Borrowed Scenery"

Tomato Crop on the Porch

"Borrowed Scenery" Beyond the Hydrangea

 Evening Falls

Tuesday, July 23, 2013


Today, I feel like a superhero wrapped in an invisible cape of immunity.  This is a far cry from how I felt two weeks ago. My WBC had crashed to 1.5 (range: 4.5 -10.0 K/ul) and my absolute neutrophils were .70 (range: 1.5 - 8.0 K/ul).   I felt frightened and extremely vulnerable so I put myself into isolation.  As it turned out, I didn't mind restricting myself to our house because I developed a miserable cold and cough and didn't feel like going anywhere.  In fact, I was unable to have my chemo last Friday because I was too ill. In the meantime, my lambda light chain (myeloma marker) has gone back up 17 points. 

I am happy to report that I think I have battled this cold into submission.  This meant that I was able to go to the clinic and have my chemo today.  After my blood draw, I settled into a comfy recliner in the infusion room, but I couldn't relax as I waited for the results.  Reasonable and unreasonable thoughts were quarreling in my head as any cancer patient can relate to.  Would my counts go down again? A big worry since they were so low and didn't have much room to drop.  Would they go up?  One could hope... What if I can't have chemo? What if the myeloma is taking control? Would I have to see the doctor before my scheduled appointment in two weeks? My mind was awhirl.

You can imagine my surprise and elation when my results came back and my WBC was 5.4!  Yes, 5.4!  My absolute neutrophils were an equally astounding 3.8.  Now, I know what you are thinking,  "Of course, those numbers went up.  You have been battling a pretty miserable cold and cough."  I know you are right, but it sure did feel good to see 5.4 after 1.5.  Realistically, I know that after today's treatment and Friday's treatment, they will probably go back down and I am ready for that.  But, I don't expect them to go back to near zero. . .ever again.

Knowing that my WBC is no longer in the perilous zone has made  me feel like a superhero with super powers protecting me.  I haven't felt like that for quite awhile, if ever, and I know it will be fleeting because I live in the multiple myeloma world where blood count numbers go up and down on that winding wicked roller coaster.  But, for awhile, I think I will relish being a superhero for a few days. 

Can you see my invisible cape of immunity?  If I squint my eyes, I almost think I can.

Friday, July 12, 2013


We just spent a week in Washington, DC sightseeing and attending the Alpha Delta Kappa International Convention. Alpha Delta Kappa is an international honorary organization for women educators. It was our third trip to Washington and we have visited many of the attractions in the past, so we were planning a more leisurely tourist schedule. 

It is a good thing that was our plan.  In the morning of departure day, I ran into our bathroom to get one more thing and ended up kicking an open drawer at the bottom of the vanity with the top of my foot. Before I could get back out to the kitchen, it looked like I had a hard boiled egg under the skin at the point of impact and, oh, how it hurt!  Fortunately, I had a bag of frozen peas in the refrigerator, so off we went to Seattle-Tacoma International airport to catch our early morning flight.  I kept the makeshift icepack on my foot all the way there and the swelling went down quite a bit and the pain went away.  I got more ice at the airport and then again on the airplane.  Thankfully, we had a non-stop flight from Seattle to DC.  By the time we reached our hotel, my foot was looking pretty ugly but I could move my toes and move my foot all around so I knew nothing was broken.The next two days we spent walking and sightseeing and walking some more and my foot kept swelling.  It didn't hurt so I kept on going . . . yes, I really did. 

The main sites we visited were the World War II Memorial, Vietnam Memorial, Smithsonian Museum of American History and the National Archives.  Of course, we enjoyed seeing the Capitol from across the National Mall, the Washington Monument that was undergoing repairs, the White House and all of the other beautiful buildings and monuments. The best part of all was spending time with our nephew and his girlfriend who live in this a grand and beautiful city.

On the third day we were there, the Alpha Delta Kappa Convention began with the Educational Symposium.  The convention covered four wonderful  days of speakers, classes, conducting business, and electing officers. There were luncheons and the whole event culminated with a lovely banquet and installation of officers. The highlight of any international convention for me is reconnecting with friends from all over the organization and making connections with new friends.  I love this organization and I love the dear friends that have come into my life because 35 years ago I accepted an invitation to membership. These friends have been a huge source of love and support to me since my diagnosis of multiple myeloma and I am eternally grateful to them.

Are you wondering about the title of this post?  No, it doesn't refer to my foot crashing into the drawer.  What it  refers to is my latest blood count.  Before I went to DC, my doctor wanted to see me one more time and check my blood to be sure I should be going on this trip.  My WBC was 4.2 (higher than usual but a little below normal), my RBC was 3.1 (low but typical for me), my platelets were fine and my absolute neutrophils were 3.1 (not bad at all).  I was good to go!

We returned home on July 8 and I had my monthly appointment with my oncologist on July 9 and we were going begin the next cycle of treatment.  Usually, by the time I am in the doctor's office to talk with him, I have had my blood drawn and the numbers are on the computer for him to check.  This time there were no numbers because the equipment in the lab was down.  So, after talking with my doctor, I went into the infusion room to wait for the results and then begin treatment.  When my numbers finally were posted, I was shocked to find out that in a week and a half my WBC had crashed from 4.2 to 1.5 and my absolute neutrophils had crashed to 0.7!  I was unable to begin the next cycle of Velcade and was sent home and my Friday appointment was cancelled.  I will return next Tuesday to try again.  It was disappointing, surprising but mostly just plain scary. I am hoping maybe my white blood cells were too busy healing my foot injury to show up for a blood test.  I will be on pins and needles until my next appointment on July 16.

My light chain and Beta 2 microglobulin results are still pending and I am nervously awaiting an email that tells me the results have been posted online. To say that a cancer journey is a winding ride on a wicked roller coaster is an understatement.  

On a more positive note, we are having a beautiful and warm summer in Washington State and that always lifts my spirits.  Also, we had another family of robins living in our wisteria this year.  I never did get to see the fledglings but I did get to hear their twittering each time mom brought food to the nest. In my May 2012 archives, there is a post entitled, The Fledgling.

The White House
On our second visit to DC, we had the privilege of
touring The White House. 

Ready for Father's Day on our porch.

Wisteria Window
The robins' nest cannot be seen in this picture but it is near the top
of the picture and a bit to the left of the bouquet. The bouquet
is on our dining table and the robins don't mind
when we are sitting there having our dinner.