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.

My friends gave me their not-so-new 1989 Honda Accord SEi a few months back.  It appeared to be in great condition for its age, and even compared to a car 10 years newer.  I decided to invest time, effort and money into getting it into tip top condition.

I started with the engine.  I think I’m pretty much done with that now, with a few exceptions.  The air conditioning simply doesn’t run cold after the conversion from R12.  I think there’s a leak.

I had the steering rack replaced, and I’m sure the mechanic messed it up.  The steering’s really “loose” now, and there’s a vibration when a turn is attempted at just about anything more than a dead stop. A friend looked at it for me, and says that a bushing is missing.  He said he can replace that fairly easily.

Once those things are fixed, I believe the car, with proper maintenance, will be good for a few more hundred thousand miles.

1989 Honda Accord

What’s new

  • Radiator
  • Exhaust
  • Distributor
  • Starter
  • Fuel injectors (all 4)
  • Tires (4)
  • Steering rack
  • Brakes

We started to work on the exterior.  It’s in very good condition.  There are no major dings, and no paint peeling or oxidation. The exception is the side view mirrors, which Matt repainted.  He showed me how to do everything, so I can work on the other plastic parts when I have time.

The interior is in good condition, aside from the leather upholstery, which is quite worn and has several tears.  I’ve found a local person who can either patch or replace the upholstery.  I’m considering just having the tears patched.  I tried a DIY kit, but they were just too large to cover.  As a temporary measure, I applied Liquid Stitch to the tears to keep them from further ripping.  That stuff gets brittle and eventually gives way, so it’s not a permanent solution.

I’ll post my progress.

I got these results last week.  Pretty much the only difference between these results and the last ones is that the IgA is about 200 mg/dL higher.  Last time, it was 663.  The m-spikes are the same.  This time, the kappa/lambda free light chain ratio is just inside the normal range.  IgM and IgG are suppressed, and at about the same levels they were in October.  Why the increase in IgA? My doctor suggested that it may simply be a normal immune response to something.

Blood tests for myeloma Feb 2012

The serum free light chains weren’t back yet when I got this. I don’t think about this stuff as much as I used to, so I probably won’t even call in to ask about it. I’ll wait for my next appointment in a couple of months to find out.

I had been seeing the doc every 4 months, but now it’s going to be every 3 months, due to a small increase in m-spike. The doc asked me if I want to start maintenance, but I said no. The m-spike was somewhere about 0.3 five years ago after I had my auto SCT.
Myeloma blood test results 2012 July

This was forwarded to me on the AAMC mailing list.

 

This is a picture of a puppy currently residing in a puppy mill in North Carolina. Under present state law, because she has “food, water and shelter” she cannot be rescued. Only when she is dead will she probably get out of this cage.
We are hoping (probably against hope) that the legislature might take some time away from passing a fracking bill, to consider legislation that would define the requirements of “food, shelter and water” a bit better than is pictured here, as well as require exercise and veterinary care.

Puppy Mills in North Carolina

If you agree that this is cruel and inhumane treatment, please let your legislators know. In Moore County, your state representative is Jamie Boles ( jamie.boles@ncleg.net ) and your state senator is Harris Blake ( Harris.Blake@ncleg.net ). You might also address comments to the Senator Pro Tem Phil Berger ( Phil.Berger@ncleg.net ) and Speaker of the House Thom Tillis ( Thom.Tillis@ncleg.net ).

There are a lot of animals in North Carolina that would appreciate your speaking up for them.

Wow. Hospitals have sure changed! A family member was recently hospitalized, and the staff actually encouraged us to stay the night and help with care. It’s a good thing to be able to do, if you have the ability.  Sometimes responsibilities at home might get in the way, but being there as much as possible helped my loved one get through the rough patch.

I remember one time when I was really sick and in the hospital, though. I didn’t even want calls or visitors.  I just wanted to be left alone. I bet most people prefer the company!