Cute kitty

I’m having one of those weeks in which I feel exhausted at the cellular level.  It wears me out to speak, even.

I have new labs to post, but it’ll have to wait until I have a bit more energy.

I think this has been building for a while now.  I decided that I’m going to go back to the University of North Carolina at Chapel Hill Cancer Center(UNC), to an MM specialist, for management of my case.  I want to be sure things are handled properly from now on.  I had switched to a local heme/onc practice for convenience, but was alarmed at the apparent lack of experience expressed in casual comments the doctor made. As you know, myeloma is not something you want to mess around with.  I believe every effort should be made by the patient to get the best care possible for the best possible outcome.

I’ll post the results soon!

In the meantime, here’s a picture of a kitten.

Would you like to adopt a kitten?

Would you like to adopt a kitten?


It’s been nearly 8 years now since I checked into the Bone Marrow and Stem Cell Transplant Clinic at Duke for my autologous SCT.

I hate that my transplant buddy, Joyce, couldn’t make it this far with me.  When she told me her time was running out, I didn’t realize how fast it would go.  I thought there’d be more time. Three months, even.  I think it was about 3 weeks instead.

As for me, I am still living an uneventful life.  My MM test result are slowly climbing.  I have no symptoms.  My doctor said we’d wait for a “triggering” event before considering treatment.  He means that we’d wait until I have some symptoms, such as anemia, before undertaking any treatment.

In July, I broke my left shoulder, but it had nothing to do with myeloma. I wound up with something called a Bankart fracture (“bony Bankart”) and Hill-Sachs deformity. A piece of the bone called the glenoid broke off.  The orthopedist explained that there’d probably be no benefit to attempting surgery to repair it.  I will just be at risk for future dislocations, but he didn’t think that would be very likely.  I was happy to avoid surgery.

Here are some some pictures that show the injury.

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Joyce Wells

I just found out that my friend, Joyce Wells, has died.  Myeloma took her life.

Joyce and I met in 2003, because she saw something I posted to the ACOR myeloma list, and wrote to me.  I always signed my posts, “Beth in NC.”  Joyce asked where I lived in North Carolina, and it turned out that we were less than a 30 minute drive from each other.  We met for lunch, and were friends ever since.  We scheduled our clinic visits and treatments at the same time whenever we could.  We’d meet for lunch before (or after) and sit along side each other when we were having infusions of something or other.  We tried to schedule our stem cell transplants for exactly the same time frame, but it didn’t quite match up.  Mine started a week before Joyce’s.  Still, our apartments were next door to each other, and we saw each other in the clinic every day.

Joyce WellsJoyce made me laugh.  I’ll never forget how she spoke of stem cell transplant programs as being either “inhouse” or “outhouse.”  Of course, she meant to say inpatient or outpatient.  It stuck though, and that’s what we called it from then on.  She explained what the term, “Massholes” meant.  It has never come up in conversation, but, if it ever does, I’m not going to have to ask what it means.

Dr. Peterson, who we both saw for a while, used to call us the “Myeloma Twins.”  I have to say that, if you can manage it, having a treatment buddy is the best way to get through chemo.

I don’t have anything more to say right now, except that I’ll miss her terribly.  I’ll never forget Joyce.  I’ll try to post more memories of her as time goes by.

Here are blog posts I’ve been re-reading to remember Joyce. I wish I had written more about her over the last dozen years.  Farewell, Joyce Wells


I got a dog!

It’s been some years since my faithful dog Buddy died rather suddenly. I’ve missed him terribly. A few months after his death, I adopted a sick old collie, who I took care of until kidney failure took her life.

This summer, I was working on a client’s network (the client is Five Points Pet Resort), when I realized there was a cute little white dog following me around, wagging his tail and just looking all happy and goofy.  I asked one of the staff, “What’s the story on that little dog?”  She told me that he had been found wandering a country road a few months ago.  Someone dropped him off there, at the resort, hoping they could find his owner.  They tried for two months to either find his owner or a new home for him.

He’s a crazy little guy.  I always had older dogs, which are usually pretty calm.  He’s the first small dog for me, and the first dog I’ve ever had that was under 5 or 6 years old.  The vets he’s been to think he’s probably between one and two years old.  He’s a wild little shredding machine!


His name is Philo.  He loves to run and play, and loves to chew up stuff.

Stay tuned for blood test results later this month.


new & improved blood cancer discussion boards

The Leukemia & Lymphoma Society (LLS) is excited to announce our new Blood Cancer Discussion Boards. The discussion boards are a great place to communicate with others who are going through experiences similar to yours. Share stories, ask questions, receive and provide support, or just see what others are saying.

To access the new discussion boards, click here. If you were previously registered for the boards and have not yet logged in to the new site, you will need to reset your password. You can learn about using the discussion boards in the Getting Started Guide.

If you have any questions, please contact an LLS Information Specialist:



These are the latest test results.

25 mg/dL (40-230)
410 mg/dL (700-1600)
961 mg/dL (91-414)

FLC with ratio
Kappa: 0.14 mg/dL (0.33-1.94)
Lambda: 3.15 mg/dL (0.57-2.63)
K/L free ratio: 0.04 (0.26-1.65)

CBC w/differential

WBC 6.8 4.5-11.0 x(10)3/microL
Lymphocytes % 42.8 20.5-51.1 %
Monocytes % 5.3 1.7-9.3 %
Granulocytes % 51.9 42.2-75.2 %
Lymphocytes # 2.9 1.5-5.0 x(10)3/microL
Monocytes # 0.4 1.7-9.3 x(10)3/microL
Granulocytes # 3.5 1.4-6.5 x(10)3/microL
RBC 4.08 4.00-5.20 x(10)6/microL
Hemoglobin 12.9 12.0-16.0 mg/dL
Hematocrit 37.0 36.0-46.0 %
MCV 90.6 80.0-100.0 fL
MCH 31.6 26.0-34.0 pg
MCHC 34.9 31.0-37.0 mg/dL
RDW 13.4 11.6-13.7 %
Platelets 189 150-440 x(10)3/microL
MPV 6.5 7.0-10.0 fL

Other stuff

Beta-2 microglobulin
1.8 mg/L  (Normal range is 1.1-2.4)


Serum Protein Electrophoresis

Total protein 6.7 6.0-8.5 gm/dL
Albumin 3.8 3.2-5.6 gm/dL
Alpha-1-globulin 0.2 0.1-0.4 gm/dL
Alpha-2-globulin 0.6 0.4-1.2 gm/dL
Beta globulin 1.1 0.6-1.3 gm/dL
Gamma globulin 1.0 0.5-1.6 gm/dL
M-spike 1 0.4 gm/dL
M-spike 2 0.3 gm/dL
Globulin, total 2.9 2.0-4.5 gm/dL
A/G ratio 1.4 0.7-2.0


Comprehensive Metabolic Panel

Sodium 137 136-144 mmol/L
Potassium 3.8 3.6-5.1 mmol/L
Chloride 107 101-111 mmol/L
CO2 23 22-32 mmol/L
Random glucose 89 65-140 mg/dL
BUN 14 8-26 mg/dL
Creatinine 0.57 0.4-1.0 mg/dL
eGFR >60 2
Calcium 8.9 8.9-10.3 mg/dL
Albumin 3.9 3.5-5.0 gm/dL
Protein, total 7.0 6.5-8.1 gm/dL
Alkaline Phosphatase 89 50-86 Units/L
ALT (SGPT) 37 14-54 Units/L
AST (SGOT) 29 10-41 Units/L
Bilirubin, total 0.6 0.4-2.0 mg/dL
Anion gap 7.2





I was going through papers a few nights ago, when I discovered the handwritten notes that Dr. Richardson (Dana-Farber) had written while I sat in an exam room, there in Boston, in March of 2003.  That was 11 years ago.  I remember him telling me, “We hope to get you to your 50th birthday — and beyond.”  At the time, I was 41 years old.  9 years seemed like a long time.  Well, that 9 years has come and gone.  I’ve known about my myeloma for more than 11 years now, and have been treatment free since 2007.  With the exception of quarterly Zometa.

Notes on my myeloma by Dr. RichardsonWhat have I learned in the last 11 years?  Lots of things. Most important among them is that no two people will have identical experiences with their myeloma disease process or treatment in the aggregate.

If someone asks me what a stem cell transplant is like, I can only tell them about MY experience.  Even if you have IgA lambda MM, and start off with the same lab values I had, and then use the exact same treatments I did, I doubt that you’d have the same experiences or outcomes.  We’re just all different.   When people ask me what I did to last so long, all I can say is, “I have no idea.”  Is it because I waited, and had the SCT later? I don’t know!

The second most important thing I’ve learned is that no other patient or caregiver is the expert, where I’m concerned.  Nobody can tell me anything I already don’t know about how to live with my myeloma. At first, I was scared of treatment side effects and procedures.  I wanted to know what other people thought and did.  I frequently asked, over and over again, things such as, “What do you do for your peripheral neuropathy?” And, “Do you have a sedative before your bone marrow biopsies?”  The answers to these questions did help me at first.  I had to find my own way, though.  I’ve been lucky enough to live long enough to keep trying different things.

At this point, I’m annoyed by people who push their opinions about the “best way” to do this or that.  It’s good to know about all of your options.  Just remember that no other person has your best interest in mind the way you do, or the way your loved ones would.  And, sometimes, you’re going to disagree with even them. Heck, yeah!

I guess I’m just trying to say that there’s no easy answer to the questions you have about what to do when you find out you have myeloma.

Here’s a short list of some things that I’ve found helpful over the years.

  • When you’re on chemo, take the anti-emetics your doctor prescribes.  If they’re not working for you, ask for something different.  Don’t stop bugging your treatment team until you get something that helps.
  • Likewise, if you have pain, keep agitating for relief.
  • For covering a Hickman or Neostar central venous catheter for showering, Glad Press-n-Seal is the best!
  • Get plenty of rest and drink plenty of fluids. Make sure your doctor recommends proper fluid intake for you, especially if you have impaired kidney function.
  • Have fun as much as is possible for you.  Just don’t hurt yourself.
  • Try to laugh.

Hang in there, everyone.