It's Been ROUGH Around Here

Dom's neuropathy has gotten so bad that he's now in a wheelchair.  He can't feel his feet.

A dear friend, Richard McM came over to build a wheelchair ramp for him.  Unfortunately, Dom is using my dad's old wheelchair-  probably 30 years old and HEAVY.  I can barely move it into my car.

On Wed., we had an appointment with Dr. Safah at Tulane.  She's going to arrange for a few weeks of physical therapy to get him walking again, then putting him back on a different chemo. She said that besides the neuropathy, his muscles have atrophied after a couple months of inactivity.

We came home very hopeful-  feeling positive- happy to be back with Dr. Safah.

We stopped to get some food to go on the way home.

Dom went to bed after eating.

I noticed that there was a message on the answering machine.

It was Dr. Safah's nurse telling us to get to an emergency room IMMEDIATELY.  His sodium was "critically low" at 120.  (Hyponatremia)

So... off we go to Our Lady of the Angels ER in Bogalusa, LA-  about 15 miles away.

The ER doctor told me to go home, as he would be admitted.

They finally put him in a private room at about 10 pm.  By that time, his sodium had dropped to 119.

They pumped him full of sodium and released him last night once he reached 130.

Got home around 7:30 pm.  He fell TWICE last night using a walker.  He cannot feel his feet or calves.

So, now I'm working on getting him a wheelchair.  Hoping that Tulane will do it.  He called our VA Rep this morning, and she said that if he got an appointment with the VA  (ha-ha), they'd pay for it.

I'm waiting to hear from Dr. Safah's folks to obtain a lightweight wheelchair that I can lift for him.

So-  kinda "gloom and doom" here.

Thanks for your continued prayers.

Dom's CONFUSING September Numbers.

Just got the call.  His numbers are jumping all over the place.  (My opinion, not the doctor's)

Some background:  For years, his M-SPIKE was ZERO.

Last summer, it jumped up to .3 and stayed there for almost a year. (blood work results)

6 months ago, it jumped up to .6  (blood work results)

3 months ago it was at .8  (blood work results)

At this point, Dr. Safah ordered a Bone Marrow Biopsy.  The reading was only 0.2 and were were all happy about this.

Fast forward to this month:

M-SPIKE 1.0  (blood work)

We have been going to a Slidell oncologist out of convenience, but have an appointment with Dr. Safah at TULANE in December.  I just don't know what to think about this.  The bone marrow biopsy is a more definitive test than blood work.

His LIGHT CHAINS are weird, too.

Normal levels of serum free light chains are:
• Kappa: 3.3–19.4 mg/L
• Lambda: 5.71–26.3 mg/L
• Kappa/lambda ratio: 0.26–1.65

His March numbers were:
*Kappa:  25.67
*Lambda:  28.00
*Ratio:  0.91

September found us at:
*Kappa:  12.8
*Lambda:  0.6
*Ratio:  2.12

I'd be delighted to get some feedback from you guys.  TIA.

A Busy, Busy Week- VA Review, Casino, Doctors and Deer

Hi gang-

Firstly, let me say that our patient is doing very well.  He looks and feels great.

Last week, Dom was scheduled for a Disability Review from the VA.  As he's in remission, and no longer taking any cancer medications, they may wish to reduce his benefits.  (Which infuriates me, as MM is not curable.  He will always be under treatment for this cancer.)

The doctor would not allow me to join them.  After about a half an hour of questioning, prodding and poking, Dom came out.  We headed to the lab for ALOT of bloodwork, then hit the road.

We spent the night at the Beaux Rivage Casino in Biloxi.  We were fortunate enough to get a "corner room", which is basically 2 complete walls of window overlooking the city of Biloxi and the Gulf of Mexico.

We played a bit of video poker, drank a few beers and had dinner at their buffet.  It's been a few years since our last visit, and Dom was very disappointed to find that they no longer serve Snow Crab Legs on weekdays.  Miss Piggy, however, made up for it by eating mass quantities of boiled shrimp and creme brulee.

All in all, it was a good day and a fun time.  But, I'm a bit concerned with the VA right now.  Time will tell.  (A few days later, we received notice that the VA would be doing an ultrasound on him next Monday... apparently they've not made a decision yet)
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We had our quarterly appointment with Dr. Safah yesterday.  We'll hear about his M-SPIKE in a couple of weeks. In the meanwhile, she is putting together a letter for us stating that Dom is "unemployable" due to his cancer.... Neuropathy, Dizziness, Fatigue, Low Tolerance to Heat and Sun, etc.

We then stopped by his Urologist's office with the same type of request, but separate issues involving his Prostate.  No problem.

This was all suggested by my new buddies at AGENT ORANGE LEGACY on Facebook  These guys really stick together, and I'm grateful for their guidance.  THANKS, GUYS!
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This is pretty neat, gang....  Dom ordered a couple of Wild Game Cameras for the property.  We've been loaded with deer lately.  They're coming right up to the house on a daily basis, and Dom has been keeping them loaded with corn.  We get such a kick out of this!  He mounted the camera about 3 feet from our house.  One night, the camera took 82 pictures!  What fun.  Here's an example..... I get a kick out of the one it took of Dominic.

Our property is being over-run by Wild Boars.  They're doing alot of damage....so, the other camera is going to be set up where they hang out in the woods.  The area is all dug up and smells terrible.... there's no mistaking their stomping ground....  Hoping to have a pig roast in the near future!