Thursday, February 19, 2009

my apologies

I know some folks check this site often to see what I might have to say, how I'm doing.

I apologize for not posting for nine days.

I have been so much weaker, I find it harder to sit here at the computer and write. Then, the further behind I get in posting, the more monumental the job seems.

Since I posted last...

When last I wrote, I was eagerly looking forward to my endocrinologist writing the letter to my neurosurgeon in NY so that we could schedule my surgery. The surgery was first on my mind. I have gotten myself all psyched up for it, ready to go and get it done and even if it takes a couple of years of recovery and a lot of suffering on the side, I had (and still have) mental images of chickens in the back yard, maybe a couple of goats, you know...dreams, little ones, of "life post fusion."

My endo, Dr. Madison, had me do 2-24 hour collections of urine for 3 more tests. He said he didn't expect anything to change his opinion, and if it did not, then he would say that I should be good to go for the surgery. I did not know exactly what he was testing for, but I did not expect anything to change. I took in the jugs and waited for Dr. Madison to write the letter I need him to write.

On Feb. 11, Dr. Madison called. He said that there were some bad results to one of the urine tests, the N-telopeptide. He said they were high. Then he said, "I mean, they are three times higher than normal! I don't know if your MGUS is factoring in here, or what."

[I've written before that I have "monoclonal gammopathy" (MGUS) which is a precondition to multiple myeloma, frankly, a very bad cancer. Dr. Fu, my oncologist who tests me twice a year for the rest of my life on this, had told me before that I have only a 25% chance of this evolving into full -blown MM between now and the next 30 years. I have not been worried about this, feeling like I had other things right now on my plate and certainly God wouldn't throw this on there, too.]

Dr. M said he wanted me to re-do the urine test. He said that maybe it's a mistake, and he wants to use a different lab, one he uses all the time. He wanted me to do the collection the very next day, felt that was important.

Well, that didn't happen. The local lab said they do not have an account to send anything to the lab Dr. M requests. I knew I had an appointment with Dr. Fu on Feb. 17, so I decided to wait until then.

Tuesday, I went in for my appointment. Dr. Fu was his wonderful, kind self, and wanted to know how everything turned out. I filled him on everything that we'd learned from Dr. Madison at OHSU, that my bones are "not that bad," and that Dr. M feels I should do well with the fusion.

Then I told him about the urine test that came back with such a bad result. Dr. Fu said that that is an endocrinological test, and not something that he knows anything about. I asked him if the MGUS had evolved into MM, would that cause this on the N-telopeptide test, and he said, "Multiple myeloma changes protein readings." I thought that was a strange answer, one I didn't quite "get," so a bit later, I asked it again, and he said, "Multiple myeloma changes protein tests."

Later, thinking about this at home, I "got" what he meant. That if the test for N-telopeptide is not normal, it indicates MM. Oncologists probably have lots of different ways to say hard things nicely.

I also told him, "Well, I'm figuring I have to settle this whole thing about the MGUS FIRST."

And he said, "Yes, that would be first."

I said, "Yeah, because if it has progressed, then I will have to abandon the idea about the fusion for awhile." (multiple myeloma has a survival average of 3.5 years after diagnosis)

And Dr. Fu said, "Yes, that's correct. That would take priority over everything else."

Then he ended on a good note, as if taking a deep breath and lifting up his posture and said with a smile, "The great news is your bones are not that bad! I have to give you a hug!" (He's never initiated the hug before!) and we did just that.

We hugged, a good hug. He's a good man.

So, now due to logistics, etc, I'll be collecting on this Sunday and then taking the jug in on Monday and it's all set up for it to go Dr. M's lab. Dr. M told me that if I did not hear from him 8-10 days after I submitted the sample, then to call him and find out what is going on.

If you need something specific to pray about, please pray that this N-telopeptide test comes back normal, clearly showing the first one was a mistake. The Lord willing.

So, this has all been on my mind, more than I care to admit. I have been good about these things before, shrugging off the whole MGUS thing and claiming that I just will not think about it or worry about it because I will not be one of the ones whose MGUS will evolve. Like I said, my plate's full.

But this time, it seems different. I pray I'm wrong. Please, Lord, let me be "thinking about this" all be for nothing.

But most of all, let me be filled with grace no matter what the journey is that You have chosen for me.


FridaWrites said...

Hi, I just came across your blog and wanted to wish you the best with everything. I have had a c5-c6 fusion and have osteoporosis so can empathize with a lot of this (the brace, not being able to lift a gallon of milk, needing the stack of ice packs, having to lift the head with my hands--or my husband's).

Every time I wonder if things could be more painful than they are/were for me, then I learn the answer is "yes"--I had not heard of a Jefferson fracture before.

I will say a prayer for good results from your tests and for your health in general. Wishing you the best.

Chuck Martin said...


We have been worried as haven't heard anything for quite awhile. We hope and pray all will turn out well. We will be praying as always for your good test results and surgery schedule.



InHisGrace711 said...

Sweetie, I am just heart broken with the thought of you with MM. You are always in my prayers. The last few weeks I have asked God several times the "why" question, and I know that He has a plan for each one of us, even though we do not understand the whys. But I come now on bended knee and pray that the test was a mistake and that Gods will be done. I also pray that the Lord gives you peace, courage, comfort, grace to deal with anything that He allows to come out of this. Dear sister, you have so much on your plate. Allow God to carry you right now, give him your all...your worries (its hard I am sure) your heart feelings. He already knows them, but lay them at the cross. I love you sister and will be in constant prayer on your behalf. Love, Jo

Anonymous said...

V, Clearly, no apologies needed...I've been thinking about what you posted and dug up a few verses for you to ponder. Maybe the best thing would be to wait...

Wait for the Lord; Be strong, and let your heart take courage; Yes, wait for the Lord. (Psalm 27:14)

Yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will rund and not get tired, They will walk and not become weary. (Isaiah: 40:31)

I know that may not bring much comfort now, when you need it, but I believe with all my heart that God will see you through this. Wait on Him, and may your (and our) prayers be answered...Be blessed my friend, Kim

By His Grace said...

Thank you everyone for your prayers! I actually felt them (and I mean that...sometimes you do and sometimes you don't...but...) today I did feel so much better. Probably shouldn't post when I'm down in the dregs, I guess, huh? Your prayers have helped and I had a great day today, staying home, catching up on a few emails, reading a bit, napping with the dogs...God is so good! Thank you!
hugs, V.
(ANd thank you Kim for the verses, they are perfect!)

One Sick Mother said...


I was just catching up and saw this. I sincerely hope it is an error and will be praying for good news for you. You deserve it like no-one else I know -except perhaps Joe, but I'm not objective ;)

zoe said...

Oh Virginia my love~
How i've missed you and to come back and find you with all of this~ darling* i shall prAY and praY again. PrAY and praY again. Holy Father, be merciful and let this cup pass from Virginia. Let this be a mistake and something that she needn't have worried about. Give her the grace abundanT! from your ever overflowing vast supply to face this day, each hour, one by one. And whatever come Father, we trust you that You are Good to us*
I love you V.

Started a blog- hm. for fun.
come and play with me.
I'm hoping to come back to HF tonight. Yesterday- last week. but especially tonight since I miss you all-
a lot*

Keep looking for the rainbow
and meanwhile
DanCE in the RAin.