Monday, March 22, 2010

So now I know that...and other, more serious, drivel!

I heard from the neurologist today.  The bloodwork I had drawn on 11 March was finally back and I received a fax with the details.  Judging by the results (and the report's ever so meaningful representation of what they mean, in harsh black and white), I'm guessing he was checking a variety of things in addition to seeing if I may be diabetic and that is causing the neuropathy.  I'm not diabetic.  Pretty much everything was normal except for VitD.  He's suggested I start taking a VitD supplement.

So now I know this, what's next?

"Wait it out and if things haven't changed in about a month, ring me up again."  So I'm guessing acupuncture is my last hope.  The Olbas oil isn't doing anything for my feet though it is quite effective for my sinuses and as everyone in the house BUT me has some sort of cold it must be working somewhat.  Of course, I don't catch colds now, I only get sinus and bronchial infections, it goes straight to the heavy stuff!

But all of this I have to sort of put in place.  Previously, I had discussed the pain measurement, on a scale of 1 to 10.  I had my idea of what that was but I don't think I've really (recently) been at a level 10 or even close.  I think the same goes for where I stand personally, as it pertains to the disease.  First, my selfish side (it's always first, isn't it?) says, "this is miserable - I have cancer, I'm not supposed to get cancer."  You can't rule out your selfish side, you can only apply it to something meaningful.  Not everyone can be like Lance Armstrong and not only beat the disease but "prove it" to everyone (while raising a global awareness of the problem and basically affecting everyone dressing styles.)  But you do have the ability to put the thoughts, anger, selfishness, concern, and even the pain to something productive and meaningful.  For me, currently, it's this blog.  I'm hoping that I can step up and do more in the very near future (which definitely means fundraisers of some nature with my one promise (ok two) of drinks and a good time, ok, three if you include the inevitable stories that will result).  But for now, I need to deal with my issues and deal with my 3 and 6 year olds which, thankfully, occupy the bulk of my time.

This weekend, while unsuccessfully trying to find comfortable shoes that I can wear to work, I happened upon three people coming out of the subway, wearing a bright orange shirt saying "Multiple Myeloma Runner Support Team".  I forgot there was a half marathon that day.  One of the priests at our church was running in support of one of the school mothers who has MM and who, when going through her transplant, required platelet donations (of which my wife was a donor).   That means her numbers were probably not that great, which means just more shyte you have to go through in the overall process.  But back to my runner support team, I didn't do this as my feet were killing me, they caught me off guard (I was passing them on the stairs and I almost missed a step in indecision), and they really had no clue who I was or that I was even looking at them.  BUT, I wanted to stop them, introduce myself, let them know I had MM and thank them for supporting someone!  I wish I had, and I hope next time I do.  But I'm guessing that the person they're supporting wasn't in as good a position as I.

In addition to this, I've already told you of my friend, battling AML, who's in a good position but still going through a chemo I have never had to deal with.  Lastly, another friend shot me a message this weekend, telling me his niece, 17 years old, was diagnosed with stage2 lymphoma.  I'm not going to get into a debate as to when is the best time to find out you have any cancer but I can safely say, in my thoughts, 17 has got to be one of the worst ages, for the patient.   It sucks to be the 'mom' at any age (and I know someone that would agree with me there, correct TaiTai?) but to be the kid, in High School, going through chemo, etc and knowing (or learning) that so much of your life that was still dreams, just can't happen is beyond my capacity to perceive.

It brings me back to the pain scale - where am I on that scale of 1-10 - selfish is pushing 4 and humble is putting down a 2 - so I'll split the middle at 3 with the caveat that I still get to play the C-card when necessary.  On a serious note, everyone tells me they're impressed with my "up-beatedness" (is that a word) and outlook.  I just can't think any other way, and perhaps that's helped me be where I am.  If you have friends and loved ones in a position like this, it's your duty to make sure they stay that way - it truly helps.

Thanks for listening, and again I've stayed up way past my bedtime (thanks Mr Dex!)


Sandy said...

No brilliant suggestions to offer on the neuropathy, but feel that eliminating all potentially toxic items from your diet might help - do you drink sodas/soft drinks? Getting good water without flouride is a better bet... artisanwell water or highly filtered... just an idea.

Anonymous said...

Good luck with the neuropathy, and thanks so much for your blog. Are you in NYC? My sister was diagnosed with MM in November of 2009, and she is uptown right now, checking into S-K for her SCT.

Take care of yourself, and please keep us updated! Regards...Bob O'C

rugbyhubby said...

Thank you Sandy and Bob. Sandy, I don't do much soda, I do like my vitamin water (revive for that bVit boost). I also drink a lot of water. I'm having acupuncture now and the acupuncturist is also recommending Reiki. I'll post more in my blog on that.
Bob - I am in NYC (Gramercy area). I'm going to St Vincents Cancer Care Center down on 8th and 15th (your sister will be up in the 60's near York I believe). Who diagnosed the MM and prepped her for the SCT? Happy to help in any way I can (remember, I have two kids that tie up a bunch of time but happy to assist where I can!)

Thanks both for reading AND commenting on my blog. If you saw my Message In A Bottle post I don't get that often. Glad to know people are reading!

Anonymous said...

Hi again...thanks for the reply! My sister was diagnosed down in Florida (she lives on the Gulf Coast). She came up here for treatment to be closer to family (my brother lives up in Yorktown). I'm going uptown to see her at lunchtime today...if all goes according to schedule, Friday will be "Day Zero." My office is at Madison and 39th, so if you ever want to grab a cup of coffee, let me know! My email is Take care of yourself...Bob.

Lorri said...

ok, not to be the geeky doctor here, but here are my suggestions. Now, here is my small print at the bottom/the lawyers are involved comment: go with what the REAL doctors say, not me.......

1. for neuropathy..........I hate to say that this may be what it is, but.....A) cymbalta......when you look it up on the internet it says it is for depression. Correct. It is also for peripheral neuropathy in specifically diabetics but works for other disease states too. It could be a nice add on. B) You probably have room to go up on lyrica. It is above the "normal" dose, but it has been used in higher doses (as long as it does not give you swelling or other side effects) C): lidoderm patches. They are topical lidocaine. Won't hurt you a bit, slap one on each foot every day. Wear 12 hours on and 12 hours off. I would suggest wearing during the day. Might help, might not, but totally worth a try. Both of these btw are prescription. D.) make sure your B12 and folic acid levels have been rechecked as well as thyroid. E.) get your vitamin D level up to 50. F) don't think you are whining or a wimp. Neuropathy stinks. G) continue the accupuncture for now. H) no splenda/pink stuff or equal. Real sugar if you have to have it sweet.

as for your redness/hives. You have used zyrtec and it is making you sleepy.....get a rx for xyzal instead....same concept but generally (not in all) better for the redness/hives and doesn't make people tired.

So my dear, that is it...hope one or all help.....about time I got on and read your blog........what a loser I am :) .........let me know if you need/want other ideas....I can blab forever !!!!!

Know you are in my day/hour/minute at a time my friend....if anyone can do it, you can.

Hey, and when I come up for my Harvard conference in June......a cold beer better be in the fridge :)

Hugs to all, Lorri